The goal I have for my type one diabetic is that he receive a fair and equal education despite the extra challenges he may have. A 504 plan allows you as a parent to sit down with your child’s teacher and make a plan that will help your child receive a better quality education. Changes in glucose levels can cause our babies difficulty while learning. I have found in my own son that just swinging from a high to a low or vice versa affects the way he learns and processes information. It has also caused behavior that is not his typical behavior. Sometimes we may think he is in a good “number” but that might not be the only factor at play. You have to take into consideration what his number is coming from and where is it headed, and how quickly is it changing. This is just a quick overview of what I have learned about 504’s and what you need to make sure you include in your child’s 504. Also something I learned early, have a new 504 meeting at the beginning of every school year. (You will have to ask for this.) Don’t skip and think that every teacher will know what to do. Just because it is written down doesn’t mean they have read all of it. (They are suppose to, but lets be real some of these teachers have hundreds of students.) I always like to meet the teachers and make sure they here all of this information from me.
What is a 504?
If anything the 504 plan is a formal place to write down your child’s Emergency plan. It also let’s you sit down with your child’s teacher to discus what you expect to happen should an emergency arise. Here you can also provide the teacher and staff information about how to treat your child if they experience hypoglycemia or hyperglycemia. This document will be the schools guide book on what to do in any situation that involves your child’s care.
Nurse/ or Trained diabetes personnel
When you have a 504 meeting, make sure you know who the trained diabetes personnel are. In the absence of your school nurse or in some cases no nurse, you will want to know who is responsible for your child’s care while at school. We have been lucky enough to have been blessed with a really great nurse while my son was in elementary. When he went up to junior high he was without a nurse. We had a really great team of trained diabetes personnel, but it is important to get to know these people and communicate with them often to update them on your child’s care. (As we all know this disease changes daily.)
Self care (What can your child do on their own and what needs to be provided for them.)
You will want to provide a detailed description of your child’s level of self care. This will be different for each child. It could also change during the year. (You can update this at any time.) Provide a list of diabetes care tasks that your child is able to complete without help or supervision. This list grew rapidly for my son as he was 9 when he was diagnosed, so he became independent fairly quickly. This list might include self check blood glucose levels. Testing for ketones etc. You will also want to provide a list of care that you want to be supervised by your nurse or trained personnel. This might include checking your child’s number after they get the reading on their glucose monitor. Or you may want the nurse to check the levels of ketones. You will also provide a list of things you want the nurse to provide for your child. For young children this might include calculating carbs and administering insulin for snacks and lunch.
Supplies
You need to think about what your child will carry with them and what will be kept in the nurses office. This will defiantly be up to you as a parent and the level of care they can provide on their own. My son has always carried a small backpack with supplies. I wanted the glucagon pen to be on his person at all time. This is something that you don’t want to go looking for when you need it. Also I wanted him to have access to low blood sugar snacks at all times. He also would carry his meter and all the supplies you need to check your blood sugar. I wanted him to be able to test his sugar in the classroom, because I felt like he was losing too much time going back and forth to the nurses office. This is defiantly something that you will need to think about and adjust to your own circumstances. Also don’t be afraid to discus some of these with your care team. I will also say I liked to make a small emergency kit to go in each classroom just incase there would be a lock down at the school and he needed supplies in the room he was locked down in. If your child isn’t old enough to carry supplies with them, make sure you store supplies in each room that they may be in during a normal school day. You don’t want to be in a situation where you can’t get to supplies because they are locked up or your child is locked in a different room because of a lock down. As a parent you are required to provide all the supplies including low snacks for your child daily. Communication is key on this because supplies might be running low and you will have no idea unless teacher/parent communication is strong.
Snacks and Meals
You will need to specify who is responsible for counting carbs and administering insulin for snacks and meals. Most of the time this is the school nurse unless you do not have a nurse then it will be one of the trained personnel. My son is now able to count carbs and administer his own doses of insulin, but we have had to go back to him being monitored by the nurse. (We found out he was guessing at carbs and just putting in numbers.) In this case I made it part of his plan to leave class 5 minutes early so he could go to the nurse. She would count the carbs on the menu and watch him put in the numbers on his pump. Now if you are brining a lunch it would be a good idea to write the carb counts on a note card so the nurse will have the exact carb count. ( This helps a lot especially if they are not prepackaged items.)
Physical Activity
You will need to know what range you are comfortable with your child exercising at. Think about what number your child feels “low” at and what number they start feeling sick at when they are “high.” At first we didn’t really know what to put here because honestly life happens and sometimes you just don’t know. We went off what the doctor suggested as a optimal range to be in which was 80-250. They didn’t want him exercising under 80 and over 250. Our rule here was to check blood sugar at the beginning of class, in the middle and at the end. You should also take into consideration what time of day your child will be exercising. Is it before or after a meal? This will help you gage what adjustments need to be made with your child’s care. One year my son had P.E. at the beginning of the day which was awful for us because he would always spike after breakfast. So he was spending a ton of time in the nurses office because he was too high to exercise. We adjusted breakfast and was able to fix it pretty quickly, but that is why it is very important to be able to talk to all of your child’s teachers to help create a care plan that will benefit your child the most.
Water and Bathroom Breaks
I will be honest this one was not on my radar when I went to plan my first 504 meeting. I never even thought about restroom and water breaks. It is important to have plenty of restroom and water breaks while caring for diabetes. Your child’s teacher will need to know that it is in your child’s health interest that they are able to use the restroom and drink water at any time during the day. We use water to help treat a high blood sugar, and that would involve using the restroom to help expel some of the extra sugar in the blood stream. This is also a very important one you will want in the 504 plan because if your child has to take a state mandated test it will be written down that they can take as many restroom and water breaks as they need.
Field Trips/ and After School Activites
You will want to workout a detailed plan about who will be in charge of your child’s care during field trips and extracurricular activities. These events are hectic for any teacher and it is easy to overlook the extra care that needs to be addressed for your child. That’s why it is very important to designate a certain person as your child’s care giver on these trips. They say during an emergency, sometimes calling 911 gets overlooked, because everyone thinks that someone else already called. That’s why they teach you to look someone in the eye and tell them to call 911. You have to be specific and detailed or something can get overlooked. I tried to make it to all of my sons field trips but in the case I couldn’t I knew who would be there and what their jobs were.
Testing and Classwork
At first I didn’t really see the importance of adding this to a diabetes 504 plan, but since I have changed my mind. This is also where you will want to clearly state they need extended time to take test and or finish class work. During the first few years after diagnosis, I didn’t realize how much time my son was spending out side of the classroom. Until his grades started to reflect this. I made sure to add extended time to any assignment just incase he missed anything while he was in the nurses office. Sometimes you don’t know something could be a problem until it is a really big problem! Once we added the extended time his grades improved! I have also extended this to read that my son must write his blood glucose numbers on his testing papers. This lets me know if he wasn’t in range during the test. It is not practical to stop testing every time my son is out side the optimal range. So we decided as a team with his teachers to write his number on the test if he didn’t pass and was out of range he would be able to retest. This was one of those things I learned the hard way. In our state 5th grade is a pass or fail grade. Meaning if you don’t pass the end of year state mandated test you can’t go on to 6th grade. Well my son took the math test and was in range all day. He made above average score on his math test. The next day his numbers were so far out of range. He wasn’t able to stop the test because once you see the test you have to finish it that day. Well the test results came back and he failed the exam. He was able to retest to see if he could pass a second time, and he did. He was in-range the whole time during the second test. I did a little research about how the brain works during a high and low blood sugar, and honestly it makes since that your brain wouldn’t be able to work properly because of not enough sugar or too much sugar! I am aware that every child is different and some will be able to function at higher levels of glucose than others. That is also why we started putting the glucose numbers on his daily work also. This let me know what his optimal blood sugar range was. I found he did better on tests if he stayed between 80 and 180. So that is now our testing blood glucose numbers.
Communication Communication Communication
Did I mention communication? As a teacher I know it is very crucial to communicate with parents, but sometimes as parents we don’t know how to communicate our child’s needs to the teacher. I have learned to advocate for my son. Even when it was uncomfortable for me. I remind you I am a teacher too, and at the same school as my son attended. This didn’t make these meetings any easier. In fact I found myself very intimidated in communicating my son’s needs. I can get very emotional when it comes to his care and needs. But, I had to learn that if I don’t advocate for him no one else would. So call, text and email any time you have questions about your child’s care at school. Make sure when there are changes that you want to make that everyone that has contact with your child gets a copy of the changes. No one knows your child as well as you do and you are the only one that can help them get all their educational needs met. Be sure to share with your child’s teacher what to look for in your child’s behavior that might signal a high or low blood sugar.
At this point in the meeting I would share with my son’s teachers exactly what to look for. My son is currently a teenager and a lot of his behavior isn’t blood sugar related but I tell them never to discount his behavior as a teenager without checking his blood sugar first. I mentioned earlier that “swinging” from a low to a high or vice versa caused my son to sometimes behave in a manor that wasn’t typically him. One incident brought this to my attention and I have brought it up in every meeting since. He was playing on the play ground, and a basketball game had gotten rough. I am not completely sure about what happened but from my understanding in a moment my son became very physical and visibly mad about what had happened on the court. The children playing with him even said it was like a light switch. He just became angry. The first thing the teacher wanted to do was punish him for the misbehavior on the playground. (I am not against punishing for misbehavior) We were so lucky to have an attentive nurse at his school. She noticed the commotion as they entered the building and ran to help. She also knows this isn’t his normal behavior and immediately checked his blood sugar manually. At this point I showed up in the nurses office to check on him. I asked his teacher what was going on and she replied ” his number is 84 he is fine.” But I could tell this wasn’t “fine.” Luckily he was wearing a glucose monitor and I could see a steep incline due to just having lunch. I knew this wasn’t my son’s normal behavior. It’s situations like this that come up during a school year that you need to have a firm procedure to follow to make sure your child’s health is addressed first.
Evacuations/ and Shelter in place
The 504 plan is in effect even during an evacuation and or a shelter in place situation. This type situation is unthinkable. I don’t even want my mind to go there, but that is why it is so important to include it in your 504 plan. You will want to know exactly who is in charge of your child’s care during either one of these situation. Again, if something like this were to happen it would be just like a field trip situation, if someone isn’t given the job to take care of your child it could be over looked. I always have an emergency kit that stays in each room my child goes into in the school. A shelter in place situation could happen at any time during the school day. If the school suddenly goes on lock down your child could be stuck in a room for hours! Your emergency kit should have water, low supplies, and if your child doesn’t carry a back pack with insulin and a glucagon pen I would probably include those also. Better safe than sorry. Also something I have thought of since my son now wears a pump, is to put it in his plan to turn off beeping notification on his cell phone and pump. If you are hiding from an intruder the last thing you want is for your phone or pump to start alerting with loud beeps.
Parent Notification
You will need to think about when you want the school to contact you. Do you want them to call you every time your child goes to the nurse? At first you may want the school to call you every time your child is in the nurses office. At my sons school they had to write a nurse slip every time he went so I would always get a mini brief on what he went for anyway, when he got home. But you can decide when and how often your child contacts you about their care. I would definitely want to know if my child needed to treat for a low or got sick because of a high. I also want to know if you checked for ketones and they were high. All of these thing require action and a plan to help fix. You can then consult with the nurse and decide together what care needs to be provided. I would make a detailed list of when and how you need to be contacted about your child’s care while at school. This should also include how to get a hold of you and an emergency back up number also.
So Why get a 504?
It is in everyone’s best interest to sit down and meet before school starts. It is good for the teachers because they walk away with a better understanding of what your child needs at school. It allows you as a parent to communicate with staff that will be caring for your child and you will be more comfortable with the care your child is receiving while you are not around. Your child will receive a better overall experience while at school. The 504 meeting is where health and education coincide
I will provide a link to the draft I have used in the past to help during a 504 meeting. I would print this off Sample Section 504 Plan. I would take this with me and start from the top and read and fill it out as we read through it. I would love to know what you include in your 504 plans. Let me know in the comments if you add something else or if there is something in this list that you never thought of adding before.
God has heard 