A Parents Guide to School and T1d

School is just around the corner for most of us and I’m definitely feeling the pressure and anxiety building with each passing week. Coral was mostly homeschooled and did some parent-and-me classes for “preschool.” I never wanted to go through the trouble of preparing her for a school and educating the whole faculty of how to manage her Type 1 diabetes. Alas, that time has come and I’ve got to get my butt in gear like so many other Type 1 families who make that jump into the unknown. Coral will finally be starting TK this August!

I’ve gathered as much information as I could from fellow pancreas momagers with their T1d kids currently enrolled in school and what I’ve sourced from the internet. For all of you taking that plunge with me, let’s be uber prepared and hope for the best with this to-do list. I’ll be posting some tips for teachers soon.

To do list for parents of T1d kids

4 – 6 months prior

• Start researching prospective schools – ask fellow parents whether they have a T1d child or not, how they like that school and its faculty. Is it close enough to your home or workplace in case of an emergency?
• See if there are any Yelp reviews about the school
• Is it private or public (federally funded)? Charter school? Federally funded schools by law must provide a nurse. However, it is not certain how many days or hours per day that nurse will be present. Especially, with a large school district like LAUSD.
  • This is why it is essential that your endo write his/her doctor’s orders meticulously to fit your and your child’s medical needs so the school receives a nurse each day for your child.
  • Learn more about your rights here.

2 – 4 months prior

• Once you’ve narrowed it down to your favorite school, see if they have a walk-n-talk tour and be sure to schedule it in your iCalendar or make a note of it so you won’t forget. If you can’t decide between 1-3 schools, schedule tours with all three. Tours give you a chance to feel the vibe of the school, how they operate, see if the teachers are happy there, and test drive your commute time.
• Bring your T1d child(ren) with you to the tour so they can familiarize themselves with the school and meet some of the teachers and the principal
• During the tour, ask plenty of questions about whether they have any other T1ds in the school and how they help manage their diabetes
• Be sure to get the principals contact info including their direct email and possibly their phone number
• Once decided on a school, ask to be placed on their waiting list (if out of district) and fill out registration forms completely. They will request for all of your child’s vaccination records, proof of residency, and more. So, you better get crackin’.

1 – 2 months prior

• Find out if and how often there will be a nurse available at your child’s school. Contact the principal and ask for the district nurses email.
• Arrange a meeting between the three of you and any teachers who will be instructing your child’s class (including TA’s) to be present during your T1d training session.
• You can also check with your diabetes nurse educator and school care team to meet for a training session at your endo’s office. This takes a lot of coordination but well worth the effort if both parties are willing to oblige.
• Have endocrinologist write his/her doctor’s orders to provide to the school nurse and keep a copy for yourself for future reference. This is typically updated every school year or sooner depending on your child’s needs.
• If child is hypounaware and not able to give him/herself injections or use their pump independently, be sure to have endo include specific literature in the doctor’s orders to ensure absolute necessity of a nurse every day all day for your child. This is what I intend to do.
• Start training and educating your T1d child about how things will be different at school, new routine in the mornings, rushing them to eat their damn breakfast and son on. I’m currently trying to get Coral to eat breakfast and lunch quicker than an hour and telling her to focus on her own food instead of others. She needs to learn that once I bolus her for food, she has to eat enough carbs to match that amount of insulin. Otherwise, she’ll go low and that can be very dangerous while away from Mommy and Daddy. At home, we can substitute something else from the fridge or pantry to make up for the carbs she refused to eat during her meal, but that’s a bad habit I’m hoping she’ll grow out of one day.
• Download and edit 504 plan below to fit your child’s needs. Carefully review it before printing and sending to your child’s school. Also, see Further Reading links at bottom of this article to learn more about the 504 and your rights.
  • Coral’s school has their own 504 model, assuming most do, and will be sending it to me to forward to her endo before school starts. So, don’t waste your precious time filling out the 504 below like I did. It’s really just to give you a general idea of what your school’s model might look like.
  • Every student enrolled in a federally funded school should have a 504 plan in place. The earlier you get it done, the better. It will have to be updated every school year.

4 weeks prior

• Order any T1d alert bracelets, IDs and such from my Zazzle shop or Etsy.
• Make a power point presentation (PPT) to present to school staff. Be sure to include a brief bio of your child, short version of his/her diagnosis story, define Type 1 diabetes, difference between T1d and T2d, etc. You want to inform, educate, create awareness, and gain their sympathy. Download a FREE template below, save a copy and edit according to your child’s needs. Be sure to hit that subscribe button for more valuable content and credit @type1diabetic_life in the footer of this slideshow and/or if posting to social media. Mahalo!

• Also, download this free copy of my Blood Glucose Action Plan. Edit it to fit your child’s individual needs with assistance and guidance from your child’s endocrinologist and/or diabetes nurse educator.

3 weeks prior

• Buy some cute lunch containers and have your child eat from it while at home so he/she can get used to the idea. Here are a few I found and have great reviews on Amazon:
  • Bentgo – leakproof, cute designs, good layout of compartments. I bought this one and Coral loves it, but has trouble opening and closing it with the click tabs sometimes.
  • Kinsho – another bento style lunch box and more affordable than Bentgo
  • BriGenius – bento style lunch box, leak proof, fork and spoon included locks onto lid
  • Lunchbots – stainless steel bento style lunch box, not leakproof
  • Omie – bento box style with insulated compartment for hot foods, very pricey
  • Thrive – cute ice packs for lunch bags
• Buy school supplies! You can always get most of it on Amazon too. As I’ve mentioned before, get Prime membership – it’s totally worth it.
• Go to your schools website (if available) and see if they have any summer events and be sure to attend if you can so you can meet more families and start building a rapport with the faculty. Get “in” with the people who will be around your child the most. If you haven’t done so already, make sure to be on their email newsletters list.

2 weeks prior

• Schedule and meet with the school’s principal, assistant principal, coordinator and homeroom teacher to give a basic education of Type 1 diabetes (hope you finished that PPT already), your child’s diabetes devices, discuss 504 plans and next steps to coordinate between your endo and school for a solid DMMP and IHP.
• Buy school clothes and shoes, new backpack, and make it fun!
• Buy school supplies – request list directly from school if not able to find it online
• Continue coaching and encouraging your child that everything will be alright and he/she will enjoy school where she’ll make plenty of new friends. I usually tell Coral, “Screw ’em if they don’t wanna be your friend. You’re too sweet to be teased or rejected and better off without ’em.”
• Empower your child so they feel confident about having their autoimmune disease. I do this almost daily and have done so since she was about 2 years old.
• Teach your child that it’s not okay to be made fun of nor make fun of other people.
• Teach your child that no one should ever touch them or their diabetes devices (phone, Dexcom receiver, pump and/or Dexcom). Of course, use your own discretion on this one. Coral’s very vocal just like her Momma.

1 week prior

• Prep and label low treat boxes and extra diabetic supplies with your child’s name for as many rooms you think your child would need them in (ex: homeroom, nurse’s office, etc).
• Make sure to provide the nurse with an extra glucagon in case of emergency.
• Prep binder’s of a quick reference guide for your child’s Diabetes Medical Management Plan (DMMP) and provide two copies: 1 for the homeroom teacher and 1 to leave in the nurse’s office.
• Do a recap with the school and principal to ensure a smooth drop-off first day of class.

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Above images: I made all of these inserts on Adobe Illustrator after measuring the walls of each side of the box then printed them out with cut lines. If you don’t have Ai, you can easily do this in Word. Each insert is taped with packing tape to the inside of the box. You can find this Standard Handy Box from The Container Store for $3.99. I wanted something with a lock latch and handle so either her, the teacher, or any of the other kids can bring it to her quickly as needed.

Day before school

• Prep school breakfasts and/or lunches for the week (if possible with certain foods), freeze remaining four portions for each day rest of the week. If not able to prep food for all five days, than do it each night prior before bed.
• Recheck low treat boxes, pack and leave near door so you won’t forget to bring them to school the next day
• Pack carb-free options as well
• Have child pick out first day of school outfit and lay it out for her to change into it quickly the morning of school
• Pack school backpack with extra change of clothes (for TK/Kindergarten) – label everything with child’s name

First day of school

Here’s what I’m going to do:

• Wear my Pancreas Momager or Kind of Tired T-shirt and carry around my Kind of Tired mug like I own the place.
• I’ll have baby Kaila with me, so I won’t be able to stake out her school for too long after I “leave” her in class. Instead, I’ll be sure that her teacher(s) and/or nurse are on a text message basis for constant flow of communication as we supervise Coral’s BGs throughout the day.
• It will be hectic and I may loose my sh*t, but we’ll see how it goes.

Best of luck to all of us and let’s pray our children are safe at school! For any questions or suggestions I might’ve missed, please comment below.

Aloha,

Shelsea

For the parent/caregiver: See guide at BeyondType1 and save downloadables.

NOTE: Every school that is federally funded in the U.S. must accommodate by law a T1d child’s needs and comply with that families 504 plan and DMMP or IHP. Learn more about Section 504 of the Rehabilitation Act of 1973 here. If you feel you and/or your T1d child are being discriminated, seek legal counsel. I’m not a lawyer, but check with your local attorney for advice.

Further reading and downloadables:

For more school prep and downloads from one of my fav T1dmom blog’s, Type 1 Basics, click here. If for any reason, you have trouble clicking the links below, please copy the title and/or subject of the source and paste it into your web search bar or Google. Sometimes websites update themselves or servers which may give you a “Page Error” when loading. Please try your best to stay informed independently. Thank you.

American Diabetes Association, “Safe at School.” https://www.diabetes.org/resources/know-your-rights/safe-at-school-state-laws/safe-school-coronavirus-resources. Updated July 22, 2021. Accessed July 29, 2021.

American Diabetes Association, “Section 504 plan.” http://www.diabetes.org/living-with-diabetes/parents-and-kids/diabetes-care-at-school/written-care-plans/section-504-plan.html.

“What Criteria are Used to Determine 504 Eligibility?”

National Association of School Nurses. “Individualized Healthcare Plans: The Role of a School Nurse.” https://www.nasn.org/advocacy/professional-practice-documents/position-statements/ps-ihps

Omnipod. “Making the Grade: Back to School with Diabetes.” https://www.myomnipod.com/poddertalk/caregiver/2018-12-21/making-grade-back-school-diabetes.

Dowshen, Steven, MD. “School and Diabetes.“

The Understood Team. “Understanding 504 Plans.“

The Understood Team. “At a Glance: Which Laws Do What [ADA, IDEA, and Section 504]?“

Berks T1d Connection. “Download: Sample 504 Plan 2.“

Disability Rights Education & Defense Fund. “Sample Section 504 Plan.“

American Diabetes Association, Diabetes Care Journals. “Care of Young Children with Diabetes…[includes downloadables].“