Gracie was diagnosed on July 1, 2014. She started 3rd grade on September 2, 2014. Her third grade teacher, happened to be a Type 1 Diabetic, and has been an amazing asset getting us on the right path for managing diabetes at school. Dr. Joy J Lea, happens to be my mother, and has been an elementary and middle school principal in the Clark County School District for nearly 30 years. Dr. Carl Vance, happens to be my uncle, and specializes in the practice of Endocrinology with a focus on Diabetes. And I am a passionate stay at home mother of six children; 4 in school and 2 at home.
I have lived, cried, laughed and learned from Gracie, her teacher, Dr. Joy J Lea and Dr. Carl Vance, MD. Here is the information I have learned and hope to share with others.
School is the practice ground for Gracie to become independent with her Type 1 Diabetes Care for life. It is also the practice ground for me, mom, to allow her to take type 1 diabetes care into her own hands. Letting go is very difficult but having a support system in place makes everyone breathe a little easier. She is given as much or as little responsibility as she chooses to take on at school. We call it our Dream Team of adults that supervise and intervene if (and when) needed. She chooses to ride her bike to school with her sisters and the neighborhood bike club. Over the last few years there have only been a handful of occasions that I immediately found myself rushing to the school to catch a double arrow down low before it became an emergency because of our Dexcom CGM (Continues Glucose Monitor).
With T1D management at school our Endocrinologist has advised us to frequent the terms Good, Better, and Best. Some good care takes place in order to have the best learning experience at school. If we are struggling in a certain care area we use open vocabulary when we ask, "Is there a better way to do so&so...task?" At all times Gracie must be kept safe! And she is allowed to be a kid, a super hero kid!
Where do I start?
Become your child's advocate! Every school and school district will have different "School Policy" regarding Type 1 Diabetes Management. Get that "Policy" in writing as quick as possible! In the beginning I found that everyone was referring to what was and was not allowed according to the "Policy" but no one was able to show me the policy! This is because in my district the Type 1 Diabetes policy is individualized and we, the parents, create the policy with our Endocrinologist. You must become your child's advocate at school and this will get you started in the right direction. Identify your Trained Diabetes Personnel (TDP). We like to call these people our Dream Team! Our Dream Team includes the following people:
DMMP or 504?
At the beginning of the school year set up a DMMP (Diabetes Medical Management Plan) & 504 Meeting. Click on the links to learn more about creating your own plan. We have provided a sample of our DMMP for Gracie. She uses a Tslim, CGM Dexcom, and Nightscout. The Red Markings indicate personal information & names. You are welcome to download and update the file with your own information for a jumping off point, especially if you are feeling overwhelmed.
Click here to view or download the T1D Club DMMP Sample Word Document.
Our DMMP is an 8 page document that outlines exactly every step of every day for Gracie's Best Diabetes Medical Management. It is extremely specific. In our case the people that will be overseeing most of Gracie's day to day activities have no prior knowledge of Type 1 Diabetes. Our third grade T1D teacher did an excellent job of helping us grow, develop, and train the other staff members involved with Gracie. She did not allow us to rely solely on her T1D knowledge. This was an important step of giving Gracie confidence in managing her own care and yet feeling safe in the classroom with experienced eyes. At the beginning of the her first year diagnosed Gracie was being forced to leave the classroom to go to the front office to do her BG checks at 9:30am, 11:30am, and 1:30pm. The counselor acting as the nurse had no medical training and was very reluctant with T1D treatments. I usually received several phone calls or texts multiple times during the day asking me to confirm Gracie's statements about how to care for herself. Even though we had the information in the DMMP packet, Gracie knew the information, and I had told/texted them the same information the day before! It was starting to get very aggravating. Gracie became very frustrated that they would not believe her and made her wait in the office to call me to confirm. Gracie was starting to loose valuable classroom time and her grades and test scores began dropping. She also started having testing anxiety exponentially and directly associated with her BG levels.
At this point we decided we needed to enforce a 504 in addition to the DMMP. We scheduled a second meeting with the Dream Team! These school meetings emotions run high for me! My mama bear attitude protecting my baby bear cub is very close to the surface. I have put my blood, sweat, and tears into these 8 pages. I have reviewed and got approval with my Endocrinologist and Diabetic Educators. I am trying to give all my T1D knowledge in less than an hour to several strangers that will care for my baby girl while she is away from me for 6 hours of each weekday for 9 months. And to top it off I am sleep deprived like most Type 1 parents.
The first few months of our first school year of diagnosis in thrid grade was rough. But we made it through and learned valuable lessons! When we came back from Winter Break we set up an iPad displaying Nightscout near the teacher's desk. With Gracie's permission we educated the entire class that the iPad was for medical use only, hands off! This is when we had our second DMMP & 504 meeting to help Gracie become more independent. Our teacher was on board to step in as the trained T1D supervising adult. We begin the meeting by reviewing Gracie's DMMP.
My favorite part of our revised DMMP document is found on the bottom of page 2.
When we get to this section of the paperwork during the meeting I put the focus on Gracie. I ask her to look around the room and see her "Dream Team" of adults helping her while she is at school. I let her know that everyone at the table is here to help her! I hand her the packet and have her read this paragraph out loud while everyone follows along. It says,
Transition Period to Gracie’s Independent Diabetes T1D Self-Care:
Gracie will follow instructions given by the T1D trained teacher/adult and document all diabetes care into the Health Care Portal. This will be a transition to independence and at any time Gracie may choose to not be independent OR if she is not able to follow instructions outlined in this 504 Diabetic Medical Management Plan she will report to the office as needed during the times outlined below.
Signature: Gracie Braithwaite Date
When she is done reading, I have her summarize what it means to the entire room. She says, "I am in charge of my T1D care as long as I use the Health Care Portal BUT if I do not follow instructions I will return to the office." I ask her if she wants to be independent? She says, "YES YES YES!" with a huge smile on her face and then puts her elementary signature on the line. After this point in the meeting she is allowed to draw or entertain herself while mom and dad finish educating the Dream Team.
If you are struggling with staff or teacher support I would start with this sample 504 document. Every school is different and will change, add, delete information as needed for your child. This is the first individualized 504 plan I presented to the Dream Team.
Click here to view or download the 504 T1D Club Sample Files from my public Drop Box
I downloaded the file from here and added details about Gracie's individual needs, especially pertaining to her Dexcom, Uploader phone, wifi, and data connection. This is a 9 page document that was developed by the American Diabetes Association (ADA) and the Disability Rights Education and Defense Fund, Inc. (DREDF). The most important details for us at this time are found in section 3 & 9.
... the student will be permitted to provide this self-care at any time and in any location at the school, at field trips, at sites of extracurricular activities, and on school buses.
If the student is affected by high or low blood glucose levels at the time of regular testing, the student will be permitted to take the test at another time without penalty.... If the student needs to take breaks to use the water fountain or bathroom, check blood glucose, or to treat hypoglycemia or hyperglycemia during a test or other activity, the student will be given extra time to finish the test or other activity without penalty.
SO MANY WORDS!
By this point in the meeting everyone is overwhelmed. I have usually wiped tears from my eyes. And most of the staff have the deer in the headlight looks on their faces! This is when I talk about the Quick Reference Guide! This guide is a simple single page that they can reference quickly. I usually have several printed out that they can post in the office, nurses office, and classroom.
Quick Reference Guide
This is a plan that provides school personnel with essential information on a single page to help Gracie.
I am my child's advocate! Type 1 Diabetes is always changing. Many people have no idea of the non stop job a parent of a T1D goes through with carb bolus corrections, glucose corrective factors, basal, and carbohydrate counting. Add on top of those issues a child that is growing, changing, trying to fit in, trying not to be different, and probably forgetting to calculate carbs on purpose or on accident. If I am not satisfied with my child's care at school I make an appointment with the school principal immediately to discuss good, better, best details for Gracie's Type 1 Diabetes transition to independence care. I do not wait for an emergency! I keep the communication open, honest, and safe at all times. The Cinderella (2015) movie has a mantra to have courage and be kind. The same goes with dealing with other people involved in my child's care.
Have Courage, Be Kind, and To Be Continued
We survived our first year of school diagnosed with Type 1 Diabetes. We have had a lot of learning, growing, and stretching! As stated before at the beginning of the year in September we focused on Gracie being pulled out and going to the office for BG checks and corrections. Then in January we transitioned to independence in the classroom. At that time I expressed to the principal my desire to add a 504 to her DMMP. He said he would pass the information onto the school counselor who would write the 504 proposal and we would meet again. Now it is April and we are back from Spring Break. I have had no contact with the principal. The teacher has been very accommodating and Gracie has been doing excellent in school. BUT it is getting close to the "BIG STATE TEST" and I have not been contacted to sign 504 paperwork. What do I do? Of course, I call my mom and ask for advice. These are the next steps I am taking to ensure Gracie has the best care at school. On Tuesday, I printed a copy of the sample 504 customized with Gracie's care information and delivered them in person to the front office at school. I do not hear from the Principal or the Counselor. On Thursday night, I email the Principal and I cc the counselor and teacher. This is my email:
Dear Mr. Principal and Ms. Counselor,(cc Mrs. Teacher)Welcome back from Spring Break! Thank you for always having a watchful eye on Gracie while she is at school. We have made great progress working closely with Mrs. Teacher and the iPad in the classroom with Nightscout. Gracie is having a successful transition to her Type 1 Diabetes independent care.Earlier this week I dropped off a sample 504 with specific details pertaining to Gracie's Type 1 Diabetes at school. She is scheduled to take the "STATE TEST" test and we have marked our calendars and will do everything in our power to have successful carb/insulin ratios with predictable meals 24 hours leading up to her testing times. I also want to make sure legally with the State of _______ we have everything covered to keep Gracie safe during the test and allowing her to perform at her best ability.These are highlights of the sample 504 packet that will allow Gracie to take the STATE TEST NAME under special Type 1 Diabetes circumstances:* At a separate location or private location in order to test BG if needed during the test
* With CGM monitor in view
* With snacks, water, and insulin if needed
* With potty breaks as needed
* Ability to retake at later time if BG is out of control as explained on the Quick Reference GuideFound in sections 3.1, 3.2, 4.1, 4.2, 6.1, 6.2, 7.2, 7.4, 9.1, 9.2, 9.3, and 10.2I look forward to completing the paperwork as needed before the first test begins on April 8th.Please let me know what else I need to do to expedite the 504 planning/processing.Thank you,JamieGracie TEST schedule:Reading Non-Performance – Wednesday, April 8th – 10:00-11:30Reading Performance – Monday, April 20th – 9:30 – 11:30Math Non – Performance – Tuesday, May 5th – 8:30 – 10:00Math Performance – Tuesday, May 12th – 9:55 – 10:55
I patiently wait for a response and get nothing all morning. Remember I have actually been waiting really patiently since the first week back from winter break in January. After lunch I call the counselor directly and ask if she received my email. She said something to the tune of being very busy and not being able to get to anything until next week. I call the office manager and ask if she knows if the principal had a chance to view the paperwork I delivered on Tuesday and she says something to the tune of he is very busy and not in the office. I ask her if she can kindly remind him to look at it first thing Monday morning because we are on a time crunch to get this done before the first test scheduled for Wednesday. We have developed a pretty good relationship and she said she would add it to his to-do list and remind him Monday morning. So I have made no progress and no communication regarding her 504 status. My next step is to step up my game. I print an official signed letter that says I will opt out of the STATE TEST if we do not complete the paperwork by her first test date on April 8, 2015. I put it in a sealed envelope and hand deliver it to the principal and teacher Monday morning before class starts.
By 10:00 I receive a phone call and follow up email from the Principal that says this:
For now that is where my story ended for the first year in school. But this story is to be continued and I continue to fight the good fight for my child's best education. I responded satisfactory to the conditions but expressed my future concerns. I will update you with our school story as life continues to move forward.
I was not able to get a 504 in place for Gracie her first year of school being diagnosed. I personally decided to keep her home on the those days of the State Standardized tests. We choose to do an insulin basal test instead (that is another post) and had a very successful Type 1 Diabetes training at home. I did not stop the fight. I continued and continued and continued. By the end of April the counselor announced that she would be leaving the school and it became apparent that she would not be helping Gracie put into place a 504. She told me that Gracie did not qualify for a 504. This is FALSE! We patiently waited for the new appointment and have been very lucky with the new counselor that was hired at our school. We continue to patiently work with the counselor, principal, and teacher. We now have a simple one page 504 that includes the special accommodations for Gracie. These accommodations are the most important legal requirements that the school is going to follow for Gracie's safety. If there is ever an emergency or law suit these are the accommodations that must be considered and followed.
- Constant monitoring by Type 1 Diabetes trained staff
- Inform parent when a substitute teacher is in class
- Careful supervision during transitions
- If blood glucose is high or low (below 80 or above 180) Gracie will be permitted to take tests at a different time
- If blood glucose is high or low (below 80 or above 180) have a set amount of time for work rather than a number of specific problems to be done
- Regular communication with parents to assure Gracie has a full understanding of her educational requirements
- Regular checks of homework planner to make sure Gracie has a clear understanding of her educational requirements
- Access to restrooms and water breaks at anytime
- Meet with the school counselor for communication and consistency purposes
If you are not satisfied remember to patiently become your child's advocate. If you are not comfortable with your child's care remember to patiently contact the school as soon as you possibly can. I often would email so I could edit my response and have a third party read before I hit the send button. Document any issues that arise. Beware that there is a learning curve for the school and you are in this for the long hall. Mistakes can happen but we learn from them and do better next time. Now that Gracie is in 6th grade we have a very successful system in place.
Remember with T1D management at school our Endocrinologist advised us to frequent the terms Good, Better, and Best. Some good care takes place in order to have the best learning experience at school. If we are struggling in a certain care area we use open vocabulary when we ask, "Is there a better way to do so&so...task?" At all times our children with Type 1 Diabetes must be kept safe! She is allowed to be a kid and you are allowed to be a mama bear. Learning and growing together.