Parents I need your help!

My name is Gaby, and I’m a senior graphic design student attending the University of Cincinnati’s College of Design, Architecture, Art, and Planning Program. I’ve been a type 1 diabetic for 20 years. As my capstone project, I intend, through the use of design facilitate a more efficient channel of communication between parents of students with Type 1 Diabetes and elementary school personnel. Has anyone experienced a disconnect communicating with school personnel about their child’s needs? What was your issue? In your opinion, what is needed to fix the problem? I’m beginning my research, and any input would be much appreciated!

My daughter goes to a school without a paid nurse. One of the secretaries happen to be a nurse in her past. The language used by type 1’s can get lost in translation. I would suggest the child take with them a sheet that describes what each word ie bolus actually means. We may forget that our language is not understood by the masses.

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When my daughter was in public school the school nurse worked at 3 schools. If there was an issue they had to call her from one of the other schools to come and help my daughter. Because of this, they allowed me to go into her classroom for class parties to calculate her carbs. When the school got a full time nurse they tried to kick me out of the classroom. It was a large school K-5 about 1200 students. So there were 4 or 5 diabetics. The process for class parties (which were all held on the same day, at the same time) my daughter had to go to the school nurse and get her BG (after waiting in line with the other diabetics), then she could go to the class party, then she had to take whatever food she ate back to the nurse (again along with all of the other diabetics) so that they nurse could calculate her carbs, then she would take a shot (again with all of the other diabetics) or after she got her pump put the carbs into her pump. So by kicking me out of the classroom she now missed most of the party time because of the process. The principal thought this was “fair” because other parents were allowed in the classroom during parties. I was about to fight it, to have her Dr. put it in her 504 plan, but we ended up moving to a private school. We have NO problems now, our nurse is awesome!!! I go on field trips to manage our daughters diabetes, even if other parents are allowed, because I am there to take care of her! But public school was an entirely different story, and it’s not right or fair! Good luck on your paper!!!

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When my daughter was diagnosed, the hospital really worked on her giving her own injections because they thought she attended the Wichita Public School district and WPS district does not have registered nurses. They informed us the school nurse would only be able to help her calculate her dosage, but would not be able to help administer. Luckily, we live in a superb of Wichita and my daughters school has a registered nurse on staff. We were so thankful and relieved. Today is the last day of her second school year with T1D and we couldn’t be more thankful for the school nurse. She knows what my daughter needs and makes sure she is following the plan that we have in place. She texts us whenever anything comes up or if they have a party and my daughter needs a bolus. My husband and I actually have a group message with the nurse so whoever sees the message first can respond. When the nurse is out, the school has a back up nurse in her place so that there is a nurse at the school at all times. Having a back up nurse also helps because the back up nurse can go on field trips with the T1D students (there are 5) and help them while they are out. All parents should have this kind of support. Hope this helps in some way!

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When my son was diagnosed his school did not have a permanent nurse. The nurse only saw him a lunch. Because the nurse was not there episodes of high and lows where not addressed in a quick fashion. His teacher even wrote me a note telling me that he was making things up to get attention. I fought with them all year. This was his first year with T1D. He was so frustrated. Then we got a great nurse. He blossomed in school. This year he goes to high school and guess what. Nurses have been removed from the schools. Nurses are the single most important part of the school for diabetes. They can catch problems before they are problems.

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Thank you so much for sharing! In your opinion what could help facilitate communication between yourself and school personnel? What would a perfect care plan look like for your son?

Thank you for sharing! If you don’t mind me asking, what kind of plan do you guys have in place that is working so well?

Thank you for sharing! Do you think an app or some communication aide would help alleviate this problem? In your opinion what does a perfect solution look like?

What do you think could be in place to facilitate the communication between you, your child, and school personnel?

Hello Gabriela. Thank you for taking on this education initiative for better parent-staff communication around T1D in schools. I have had T1D since age 6 and I have a son with T1D. My elementary school years were about 50 years back. In that time and in my small hometown, life was simpler in that there was no blood glucose testing, and my insulin regimen was one morning shot and one evening shot before dinner, both at home. That said, the teaching staff watched me like hawks for signs of hypoglycemia and were very supportive of keeping me in the classroom. There were no written rules that I know of; it was more the small town effect of people who knew my doctor, or my aunt the nurse, or my older brother in the higher grades. It was also my engaging parents who kept the teachers informed. I carried sugar tablets, and was allowed to use them as I judged appropriate. Lessons: Use your network. Be proactive and gracious to do the best you can for your child. Others will appreciate your diligence and find it easier to practice the Golden Rule in return.

Flash ahead to 1999 when my 4-year old son was diagnosed with T1D. He entered school with an Individual Education Plan (IEP), because of autism and T1D. BG testing and shots were very scary for school staff, and my wife spent a lot of time talking with staff and going to the school. She was kind and informative and was always welcomed by the staff. Once my son started on an insulin pump at age 8, the school staff were capable and comfortable with dosing insulin. We had a signed doctors order written dosing algorithm for his insulin dosing (one page), and he took his lunch to school every day (through high school graduation). The doctors order algorithm sheet was updated as needed. We were lucky in that my son is very regimented in his lifestyle and diet. So, there were not many needs for T1D rescues at school for highs or lows. He carried a small backpack that always included his packed lunch and juice boxes for hypo treatment. From middle school, he would check his own BG and treat lows as needed. His use of his pump bolus calculator for high BG adjustments was always supervised through middle school. He managed it himself in High School. Our state implemented a great school nurse program in 2005, and it worked really well for T1Ds in our county. However, the state scaled back the program to cut costs in 2010, much to the regret of T1D families! Now each nurse position is shared across 3-4 schools.

For T1D children who have low access to healthcare and working parent(s) who cannot easily leave work during the day, there is great unmet need for T1D management at school. While there are horror stories, the public school staff seem to do the best they can with what they have. They are woefully underfunded to adequately educate, much less take care of challenging chronic medical needs, particularly in young children. For these and many other reasons, JDRF has worked diligently to advance the closed loop artificial pancreas systems now in development. Until they are more widely available, I think educating school staff about T1D is the best thing we can do to better the situation. It has always helped me to understand WHY something needs to be done a certain way, and particularly with regard to T1D. I think the same is true for stretched-thin school staff and school nurses. In my county, I have done volunteer T1D training for my son’s school staff, and I have done school nurses training classes (before school year start) (who in my state are employees of the Public Health Department). These training sessions were much appreciated by the nurses. They felt free to ask all their “dumb” questions (which were not dumb at all) and were very appreciative of the information that helped them better understand the thinking behind diabetes management strategies and doctors orders for individual patients. Lessons: Be a diligent and kind advocate for your child’s needs. As my grandma would say, you get more flies with honey than vinegar. Be a strong advocate for more and better T1D-trained school nurses in public schools. Martial resources within your community (including your JDRF chapter) who can help identify solutions for your child’s T1D needs in school, and who can help make that T1D education happen for school staff. Twist your doctor’s (or your Certified Diabetes Educator’s) arm to volunteer to do 1 hour of T1D management training for the school nurses in the fall before school starts. We are all made better by every dollar and every hour invested in better public education!


Thank you Randy @andersrl for posting this wonderful “proactive” outline for parents of school-aged children with TypeOne. It certainly is good to see a family, your family, take the initiative in their child’s care rather than passing of those duties to “the other guy”. I can see how your 50 years experience living with T1D has influenced your outreach.

And Welcome to TypeOneNation; as time goes on I hope that you will visit often - your first two postings have been very informative.

Thank you, Dennis! Glad to be of service to this community!


The solution…that’s a tougher question. I can tell you that now that my daughter wears a Dexcom and we have the app and so does the school nurse, it helps a ton! When the nurse realizes that she is dropping, or going low, she takes a juice to her - in class. But again, we are at a smaller, private school, so there is more flexibility. But yes, an app would be a good way to track it, but that only works for the kids with constant BG monitoring like the Dexcom. :slight_smile: