I was reading a story yesterday and it seems to be that there is always much going on surrounding schools…..ever notice that point? Certainly understandable when you consider the amount of time our kids spend in school.
When it comes to diabetes, for the most part, these posts are not good. I have often stated that friction vs. friction will only get you heat; and for the most part that is true. Parents have been in discussions and used phrases like “…..you need to do what I am asking, I PAY YOUR SALARY….” yeah, that’s probably a phrase that should be avoided at all costs.
Frustration, anger, and misunderstandings have, since diagnosis, given some families real ‘agita’.
Over the years there are some stories that stand out; and not all bad believe it or not. Here are just a few:
The assistant principal that told the child a cell phone was not allowed in school and when told it was an insulin pump, did not believe the child, reached down and pulled it off.
The child who came home from school and told her parents that her school nurse wanted to work out a way to wear an insulin pump for a few days so she understood what it was like (it was arranged with saline).
The school calling home to inform the parents about an upcoming-few-days-away trip at a theme park and asked the parents to come to the school and explain to everyone going on the trip (kids included) about diabetes and about various warning signs so the whole class would have ‘the child’s back’.
The elementary school teacher that called home and said, “There is a child’s birthday party here tomorrow, you probably should keep your child (with diabetes) home.”
FLIP-SIDE The elementary school teacher that called home and said “There is a child’s birthday party here in school tomorrow and it is the first one since your child was diagnosed with diabetes, what can or should I do. Teach me.”
There are always good and bad to so many situations in schools. My son graduates high school this month. Both my kids with diabetes truly could not have been in a better school district when it came to their diabetes.
It breaks my heart when I read the horror stories. I would love to hear from those that had good relationships. Please share why you think it was a good relationship; how did you build that to a ‘good place’. I’m sure others could learn and would want to learn….so kindly share.
This could help people to start working for next year’s academic year; but for this year it will soon be……school’s out!
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26 replies on “School Horror Story…….How Did YOU Build a Good Relationship? Please Share!”
We were very lucky when my son was dx.d when he was nine in 2007. His teacher actually came to the hospital with a gift and told my husband and I that she was getting a 504 ready and that they would be meeting with us when our son returned to school. We had no idea what a 504 was at the time. My son will be entering high school in the Fall and our elementary and middle school experience has been awesome. In fact I just had my son’s 504 plan tweaked with his 9th grade Counselor this week – everything will be in place when he starts school. 🙂
I’m thankful for an extraordinary school experience over the last 2 years. My son was diagnosed at the end of 4th grade. His 5th grade teacher had Type1 and the same Medtronic pump (yeah, crazy right). On the first day of school, the nurse and my son gave a presentation to the class on what Type 1 was, how to help my son if low, etc. The school nurse kept a spreadsheet of daily BG and mailed them to me at day’s end, calling immediately to let me know if any highs or lows would be corrected, and tested him before the bus and keeping him there for me to pick him up if below 70 to avoid complications on the long bus ride. Snacks & juice were kept on the bus and in every room including the gymnasium. The whole school was supportive and esteem building. I go back to my first sentence where I say “Extraordinary Experience” – why should this be unusual treatment? This should be the norm and if it’s not, we need to fix that.
We were told from the beginning by our dr to try to “create a good relationship” with our son’s school. They don’t follow ADA completely (the nurses aren’t there all day), but the principal and the teacher really did take care of him. She had my husband and I on speed dial, and we pretty much got called on a daily basis, but he wasn’t left out of any activities. He just finished kindergarten, btw. My only complaint is that no one can give him insulin or glucagon except the nurses. Still, they were extremely helpful, driving back to our son’s school two and three times if they had to.
My T1 son just finished up his 9th grade year of high school, and already I am beginning to think about him graduating high school and going off to college. I test him every night around 1am while he’s sleeping to make sure his blood sugar is sufficient to get through the night without any ‘issues’. (Even after lots of encouragement, he does not want to use a pump; he still gives all his insulin by injection.) Any suggestions on how to get him in a routine to begin testing himself during the night in preparation for going to college?
I leave this out there for others to chime in on….a heart-to-heart with his roomie might be in line. Let’s see what others say as well. Good luck.
We’ve been very lucky. Our son’s preschool/daycare manager knew more about diabetes than us when he was dx’d at 23 months! We’ve found that patience and humor go a long way. I also tend to give teachers and staff some leeway – it’s not going to be perfect, but as long as I feel they care about Benny and take diabetes seriously, I’m confidant he’ll be safe and happy. Benny finishes second grade today(!) and the principal has already selected his 3rd grade teacher and put us in touch for a summer-time meeting. I do suggest parents speak up (politely) and make sure the school knows that there is no one-size-fits-all plan for diabetes. We have 4 type 1 children in our school and we all have our own plans.
Love the ‘…..no one-size-fits-all….’ line and thank you for sharing your experience.
LOVE THIS “I also tend to give teachers and staff some leeway – it’s not going to be perfect, but as long as I feel they care about Benny and take diabetes seriously, I’m confidant he’ll be safe and happy”
I know as a D-mom of 2 cwd I don’t get everything right all the time and my kids don’t either – I would never expect others to always get it right.
I am lucky to have a district where there are 2 RNs at all times. When there are school trips day or overnight parents of diabetic children are given first choice to go. My son was issued an anytime pass( anytime he needs he can leave a class to check his blood , eat something or inject himself) he is aloud to carry his monitor as well as his pen. Tonight is his 8 th grade dance. He was not going because he did not know what they would have for dinner. I spoke to his guidance counselor , she sent me a menu and was able to get him a last minute ticket. When he was first diagnosed we had a meeting with the nurse, social worker, dean of students, phycologist, asst superintendent, and dean of education, they asked me what my son needed and what can we change to make a difference. What signs should teachers look for. They have started to incorporate training and awareness within the staff. My son is aloud to have his cell phone on him at all times because it has a blouse app. His lunch can be refrigerated and he was given access to a microwave. He enjoys both a cold lunch and a hot lunch. Our food has been instructed to measure servings( although he said the food is awfull. If you have not had a meeting with school administrators I would recommend it. Know your rights under tha Americans with disability act as well as your local and state laws. You would be surprised how much you can accomplish. Next years freshman fundraiser will benefit JDRF.
We have been so blessed with the school nurses and teachers my daughter has had since starting Kindergarten (she’s now going into 5th grade). The nurse at her first school, K-2nd, told me (with tears in her eyes since I was a wreck) that she would take care of her like she was her own. And, she definitely held up to her word. We love her and are so thankful for her to this day. Her current nurse is a WONDERFUL lady as well, and has been so good to our daughter. They both have taken care of her exactly the way we asked, and have went above and beyond that. Her teachers have been great as well. They have really watched out for her every year. We really couldn’t ask for more.
What an upbeat post—-SO GREAT to see……thanks for sharing.
My daughter was diagnosed two weeks before school was out. The nurse was wonderful. She sent information to every teacher that my child comes in contact with during the day including the media specialist, PE, Art, etc. explaining the symptoms of highs and lows and what to do if she did not feel well. She told me on the last day of school that she was planning to go to an educational clinic at our local Children’s Hospital to learn more about T1D. I am thankful that she cares enough about the safety of my child to take time from her precious summer break to do that. Our school has been very supportive.
Nice to hear that you had such a supportive edcation syatem…..surely appreciateyou sharing with us—-thanks. 🙂
Fabulous—-thanks for sharing.
I love all of the positive supportive stories! I wish it were always the case I have heard many of the horrible stories from friends accross the country. Just like diabetes care isn’t a “ones size fits all” not all schools/nurses/teachers/administrators are equal.
We were so very blessed when we lived in TX. Full time nurses but if the nurse was out or busy with another child – or at lunch there were always multiple staff members trained and willing to provide proper care, make a call, and love my children. Aside from my friends it is what I miss most about TX (at least our district – again not all TX schools are created equal).
Here in CA its a different story. My daughter in middle school has been fine. No nurse but supportive teachers and my daughter is very self-sufficient. The elementary – not so much. They did hire a nurse (the floating district nurse insisted because of CA law making it illegal for any non-licensed person to assist in diabetes care – this is changing – I hope – the supreme court is due to give a descision in less than 90 days. not all CA schools can afford a full or even part time nurse – ours could) Anyway – going back to not all nurses are created equal – the nurse they hired knew nothing of diabetes and I spend the majority of the first half of the year training her. Never truly convinced she knew what she was doing. Thankfully my son (3rd grade) has been doing diabetes for over 6 years and was mostly self-sufficient. I do not believe anyone at the school ever became qualified to administer glucagon and many staff told me “we don’t deal with the diabetes stuff – thats on you”. Once when my son was 29 – yes 29! He told his teacher and then went to the hallway alone to call me – he had not treated first and was left alone. WTF? The teacher said she could see him from the classroom. When he called (he carries a cell phone – as per his 504) I told him to sit down and drink a juice. I used my home phone to call the office and have someone go get him and bring him to the health office where he continued to treat his low and wait for his blood sugar to be safe. The nurse was not there yet – she doesn’t start until an hour after school starts.
Then that nurse left and a new nurse came. She understand diabetes more but is often MIA. a few times when my son would go to check a blood sugar she would be no where to be found.
I hope schools continue to learn and understand the importance of providing proper care to the best of their abilities. Especially with recent reports that type 1 is increasing more than 3 percent a year in young kids.
Best advice to all – be polite, be firm, understand your child’s rights, don’t let schools bully you or your child. Also – be forgiving if they are trying but slow on the learning curve.
So many o fus have been following the California situation in the news…..our hearts go out to all who wait for a btter system of school care and wait anxiously the ruling of teh courts.
Thank you for sharing your incredible ;ongoing’ story.
Our daughter was diagnosed 2 months before the pre-k. They did not have a nurse; however, she went for 3 hours only so the staff was willing to check her BG if needed and treat her lows with juice, no insulin administration. She sometimes run high, I took high over low. The real worries started when kindergarten started. School did not have a nurse. We had to fill out bunch of documents, endo had to sign and waited the whole summer for approval whether we will get a nurse or not. Nerve wrecking and very little information we were given. But, after attending the ADA safe at school seminar, it was expected and they reassured us they will help if scholl was not accomodating so we left it that way. ADA also strongly encouraged parents not to be mean or angry with any of the stuff at school, They dont have to listen to you and your orders, so I tried to be as polite as possible. It turned out we were given a nurse (an LPN) who was going to be for 5 hours at school. She had no idea how to take care of kids with diabetes. It was nerve wrecking when I saw she did not know how to use a pen to inject insulin. I took a day from work and trained her a whole day. I was furious but had to keep my emotions in control for my daughter well being. I figured if she were to take care of Maya, I have to be friends with her not enemies. I have to have her on my site. We have developed a 504 plan, so she had to call me every time she injected or treat low or high. Eventually, we switched to a pump to make it easier for all of us and after everyone realized how important is Type I and proper care, school had her ful time withing a month. She was trained by me the whole year and now understand diabetes. We kind of developed a good relationship and I knew I succeeded by being polite and patient at the beginning and during the school year. She run many times to Maya’s class to treat low, she assisted her during lunch in the cafeteria (not many nurses do that), she kept Maya’s diabetic friendly ice cream, she went with Maya for field days. It turned out great because Maya had her almost 100% attention throughout the year. My advice to parents: it is a good thing school have no diabetic kids because yours will have 100% attention, and be patient. Take a day off or two and train, train, train. It will turn out the way you want it. If any problems, contact ADA safe at school program.
Prior to my daughter’s dx, I had experience being a parent of a child in 5 schools (not counting preschool). My son has a severe food allergy…so some of the same obstacles as having a T1 kiddo in school. He attended two public schools and 3 private….job relocations made school change a necessity during grades K-5. Until his fifth school, I repeatedly asked to be room parent and was denied. I clearly explained his food allergy and was met with lack of compassion, understanding, cooperation…I just assumed that was the way modern schools were expected to be. At our 4th school, a young man caught a virus that caused his antibodies to attack his spinal cord paralyzing him for life at age 10. The religious school spent the 6 months of his hospitalization taking his tuition money, while figuring out how to force him to leave as they didn’t want to accommodate his needs. They succeeded in making him and his family miserable when he returned in the fall…he lasted less than one month. Over the next 2 years, I battled with is this the right school for my son…my daugther was younger and having a great experience. But when my son begged to go to a new school (the kid who had been forced to change schools so many times and had never wanted to change again) I had to listen. And I thank God daily that I did. Not only did they readily accommodate his food allergies (and even though he graduated 2 years ago, they still have foods taht are safe for him at every family function), they asked me to be room mom. And so many other wonderful, caring, thoughtful things that I cannot begin to address. Anyway, 2 years later my daughter was dx’d with T1….over Christmas vacation….I was able to call one of the teachers (who always gave us her home number) and ask her to get in touch with the principal, who happened to be out of town. By that afternoon, the principal called and said “We will do whatever you need us to do for you and your family.” That was it…I didn’t need to beg, scream, cry….I didn’t need to advocate for my child because the school already was an advocate for my child. We have been blessed to be where we are….and we appreciate it even more because we know that not all school communities really are family.
Hi Diabetes Dad, Just leaving my 2 cents, because I am a ‘horror story’ parent. My son was dx 2 weeks before starting 1st grade & I went into the diabetes in school process with rose colored glasses on. The first “mistake”–not being given the food insulin was administered to cover—I handled with a smile on my face–even when told by the teacher “I didn’t know he had diabetes.” My thought was ‘oops, we are all learning, I understand.’ Then came the 2nd time, the time after that, and 3 years of ‘OOPs I forgot he had diabetes!’ I have always remained respectful and courteous, but I can’t say I was always met with the same respect and courteous behavior towards my son or me.
After 3 years of being given food without insulin, insulin and not given the food, and mis- dosing of insulin, my son age 9, now does ALL his own dosing via cell phone calls to his parents. We tell him the dose–he administers his insulin.
I believe what is needed is certified diabetes education in schools, at least at the elementary level-to keep our kids medically safe in school. 504 plans, IEP’s, DMMP’s, ect are JUST PAPER unless staff have a basic understanding of diabetes. I believe schools are doing a dis-service, not just to kids with diabetes, but THE STAFF by not having diabetes education for ALL who are responsible for children with diabetes in school. Forgetting or not knowing a child entrusted to them has diabetes is not acceptable. Not to me anyway.
Dealing with schools should not be a ‘kill them with kindness’ to keep your kid safe. It should be a matter of course, common sense. This child has diabetes–get the 504 rolling, get the staff educated, let’s help this child succeed in school. Unfortunately, many times this does not happen. Not because parents come in with guns blazing–it does not happen because schools DO NOT know enough about diabetes. Just like I didn’t know enough before my son was diagnosed.
To me, educating our educators is the KEY to keeping diabetics medically safe and successful in school.
It is a balance—-when to push, when not to push—it has always worked, for us, to not talk down OR up to those in academia settings. Be informed, be educated, and be ready to teach.
Thanks for writing.
My daughter was diagnosed at 5 – 5 days after starting kindergarten. She starts junior year in high school in the fall. Like others have stated above, this school district has not always followed the ADA rules (like allowing testing in the classroom) but I’ve learned you need to be a little flexible to make sure your child is getting the best possible care. I couldn’t agree with you more – don’t scream, yell or be mean. The only person that will suffer is your child. I can honestly say that the relationship that Katie built with her nurses over the years has been wonderful. The fact that she has to go see them to test rather than test in the classroom has ensured they can see her, ask her how she’s doing and ultimately build a close, loving relationship. They love her and she loves them. It takes a village 😉
Shelby was diagnosed 2 wks after school began in 5th gr.A gym teacher from a previous school and an art teacher recently retired, came to the hospital to encourage her. All through school she had wonderful nurses (except at prep school) & caring teachers. Some staff could’ve used help tho 😉 I was welcome to assist on class trips(my employer was accommodating) & I never paid my own intermission.
It’s been a year since my daughter was diagnosed. The school nurse I dealt with in the beginning was absolutely wonderful. She helped me through a time that was extremely rough. When she left the school, I cried. The nightmare began when I had to deal with substitute nurses. One nurse refused to give my daughter insulin for the breakfast she ate. I WAS LIVID. It was my wake up call that not all nurses understood Type 1 Diabetes. Luckily, we moved. The school nurse at the new school is a dream. Not only is she a nurse but a mother of a T1D. She has helped my daughter and I so much. She was the one to make sure that the 504 plan was very specific to our needs. For example: if there is a day that the nurse will not be there, I am allowed to come in throughout the day to check blood sugars and give insulin or keep my daughter home (without it counting against her). She made sure everyone involved with my daughter, understood the horrible experience we went through and never want repeated again. She helped to get my daughter a teacher that was very understanding. I can go on about this nurse and how detailed she is. The other nurse at the school is also a blessing. She worked at a diabetes camp during the summers. We are truly blessed to have two wonderful nurses and a great school. The staff have been fantastic.
Sorry, I forgot to mention that my daughter was 8 when she got diagnosed.
I am a teacher and both my kids and I are diabetic. I am able to go to work every day without worry and know that my kids are safe and cared for. We are blessed. Teacher, custodial staff, and especially the secretaries have given their home numbers and have come to school at night if supplies were accidentally left in a locker. They informs us early of field trips, ask us how we want to handle treats on party days, and don’t single my kids out. We are so blessed.
i hate to hear some of these stories and consider ourselves ver lucky. since my daughter started pre-k to current 3rd grade, kids have been so accepting of her and actually have her back at all times. our school nurse, the principal, and all teachers have been outstanding. our nurse even offered to learn how to change out our daughter’s insulin set if need be. Even some parents have been great when it comes to b-day parties’ class parties the nurse will figure out the carbs if need be. I cant imagine some people have to go through so much and its really sad.