Not your normal “Back to School” post

If you read my daughter’s story about her diagnosis, you may remember that she was diagnosed while she was at summer camp, which was hosted by the town we live in.  She shared that when she got out of the hospital and went back to camp, when she told some of the boys about her diagnosis with type 1 diabetes (“T1D”), they looked at her “like she was a strange new animal in the zoo.”  

What she doesn’t know is how the camp administration saw her.  

After I dropped her back with her peers, I took her insulin, glucometer, and supplies, including multiple forms of fast acting carbs, glucagon and everything else she could potentially need and met with her lead counselor, the staff from the medical center.  It had actually occurred to me while she was still inpatient to have the endocrinologist sign off on the “administration of medication” paperwork for the camp as well. I felt like I had my crap together!

I carefully explained everything to the camp’s team and after I finished, the lead person looked at me and said, “We can’t help her with any of this.  She needs to be completely independent.”  They went on to tell me they had other campers with T1D, but they were all independent in their care.

I must have stood there for an uncomfortably long time before I said, “She’s only know about this for five days, how do you expect her to be able to do this all by herself?”  I was still struggling to pinch my daughter’s skin and stick her with a needle and they expected her to do it all alone?  

That set off a series of animated conversations that I had with the administration.  Initially they told me it was because the medical team was led by a medic and he wasn’t allowed to administer shots.  I found a local certified diabetes educator who was willing to come in and train either the medic or a designate to do the shots, but the camp refused the training.  They told me that there had been no nurses available that summer (though someone else had quietly shared with me that there had been an intentional decision not to have a nurse that year as a cost saving measure – which I have no idea if that’s true or not, but it could be feasible).  They told me they were trying to find a nurse for my daughter, but no one was available.

The camp also refused to administer glucagon for my daughter in an emergency.

I met with the Camp Director and provided a copy of a flier from the U.S. Attorney’s office that addressed summer camps and the Americans with Disabilities Act.  The document specifically states that:

The Americans with Disabilities Act (ADA) requires that summer camps (both private and those run by towns or municipalities) must provide reasonable modifications of their policies, practices, and procedures when necessary to enable campers with disabilities to participate fully in camp programs, unless the camp can demonstrate that the necessary modifications would fundamentally alter the nature of the services and activities offered by the camp.

The camp director reviewed the flier and looked me in the face and said, “Well this is really nice, but we are a Recreation Department, not a summer camp.” I may have told her it was an unfortunate position, but when I filed my complaint with the U.S. Attorney General, I would be certain to let them know and provide them with copies of my invoice that said I had paid for “summer camp” and the weekly newsletter from “summer camp”.  

I asked her why she viewed my daughter as such a liability.  I assumed she was going to talk to me about her fears of not being able to manage her blood sugar or of giving the wrong dose of insulin.  She told me she was concerned that someone on her staff might get poked by one of her needles.

I asked her if the medic or camp counselors would administer an EpiPen to a child have an anaphylactic reaction and pointed out they also had needles.  Her response was that they had been trained on EpiPens (my counterpoint was that I had offered her training from a CDE which she refused) and that they had never actually used one so the risk was low.  

(In case you’re wondering, I left my daughter in the camp – I didn’t have much of a choice because both my husband and I had to work.  My employer accommodated me by allowing me to work remotely and knew that I would go to the camp every day for lunch and any other time she needed assistance.  I was fortunate to have their support, otherwise I would have been fired.)

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Ultimately I didn’t file a complaint, but because of the issues I had with the summer camp, I decided to make a stop at my daughter’s school on the way home.  I figured that if I was going to have to fight with them, too, I might as well start the fight in August before we returned in September.  

The secretary asked how she could help me and I gave a quick rundown of my daughter’s diagnosis and essentially asked if the school was equipped to support a child with T1D. She looked around and then in almost a whisper told me that the school nurse was also a T1D Mom.  Not only was she was T1D Mom, but more than one of her kids was type 1.

There was a sense of relief that flooded my heart that I don’t think I could explain.  

When it came time for me to meet with the nurse before school started, she patiently listened to me explain everything as it related to my daughter (which was pretty silly in hindsight, she already knew what I was telling her).  

She became my advocate within the school and set the standard for how I approach my daughter’s care within the school.  While I decided not to have a 504 plan the first year (in hindsight I wish I would have), we had a robust medical plan and the nurse ensured that my daughter’s medical and scholastic needs were met.  She kept me in the loop with everything that was happening. We would discuss the 1,001 different scenarios that would come up and I learned so much from her own experiences.  

My daughter went to her before recess, gym, lunch, snack time and any time she didn’t feel well.  She spent a lot of time in the nurse’s office and out of the classroom and it definitely had an impact.  But we had a successful first year.  Not without bumps, by any means, but we had our feet under us and were running.  

At the end of the year, the nurse let me know she had tendered her resignation.  

That summer, my daughter wanted to go back to the same summer camp.  One of the best things (I think) I did the previous summer was to document the discussions I’d had with the camp director in an email to her, including the link to the flier.  I talked to a lawyer ahead of time and told him I hadn’t been in a position to fight the year before, but if anything happened, I was going to litigate.  If anything happened again, with the documentation that had been created the year before, I hoped we could show a pattern of behavior of discrimination against a child with T1D.  

Fortunately, the summer camp had better laid plans for our second year there.  They had a nurse and a delegate on staff for the summer.

I really didn’t want anything to do with them, though, and my daughter and I managed her diabetes through text messages or phone calls.  We used the data from the Dexcom and there was only one time that I made her go sit with the nurse until her blood sugar corrected itself.  It was a different experience than I expected.

The following school year, I met with the new school nurse and kind of quizzed her about her knowledge of T1D.  She had managed kids with it before and based on our conversation, I was comfortable with my daughter in her care.

But the seed had been planted after summer camp that my daughter and I could manage really well via text and phone calls.  

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I worked with the endocrinologist to write a medical plan for her that recognized her iPhone and Apple watch as medical devices.  The plan also specified that my daughter was allowed to use her Dexcom reading in lieu of finger sticks, but could also do finger sticks if we wanted to double check anything.  

The medical plan only required her to go to the nurse for low blood sugars where she felt she needed the nurse or where I called and said she needed to be with the nurse.  She was allowed to go at any time, but she was no required to go for gym, recess, lunch or snack.  

I did have her do a run-by the office before getting on the bus just so the nurse could glance at her Dexcom data (she was a Dexcom follower) and double check to make sure she had a juice box in case she needed it on the bus.

There were a couple of times she wanted to take a break from her pump and go back to shots.  The school called me to confirm that she would be doing her shots in the nurse’s office. I shrugged and said she’d do them wherever she was comfortable.  

They pushed back a little bit and asked for the Endocrinologist to sign off on her doing it outside of the nurse’s office.  The Endocrinologist emailed back and recited the state law which allows students to manage their diabetes anywhere on school property and that preventing her from doing so would be illegal.  

The nurse also started to talk to the nurse at the middle school (where my daughter would be moving to the following year) to prepare her for the idea that my kid wouldn’t be coming to her office for everything.  

In middle school, there were five other kids with T1D.  The other five all visited the nurse’s office. While the nurse didn’t seem like she was really onboard with it initially, we continued our approach of me managing her diabetes with her via text.  She also wasn’t used to kids eating or drinking in the classroom, but she was supportive and told me she would talk to the teachers about it so they understood.

A few days into the school year, we got an email that there was a child with a severe nut allergy (including airborne) and while the school was not nut-free, parents were encouraged to consider the other child when sending food to school.  I had literally just sent my daughter in with a box of peanut protein bars, but had her take them to the nurse’s office with the instruction that if she really had to have one, she could eat it there, but she wasn’t to eat them elsewhere. We found other foods that were nut free that she carried with her in case she needed a small snack while in class.

As we approach the next school year (our fourth school year with T1D), we will continue to move forward with this approach.  My daughter always carries her PDM (personal diabetes manager) for her pump, insulin, a lancing device, backup pod, fast acting carbs and small snack.  That bag goes with her everywhere.

I kind of like back to school.  There is a routine and schedule that is mostly predictable.  I set alarms to let me know when she’s about 20 minutes before gym, the lunch or bus so I can see what her blood sugar is and where it’s going.  We will continue with this approach because it’s what works for us.

At the end of the school year, I sent a letter to the principal, which was also copied to the nurse, her core teachers and the superintendent (do you get the sense that I like writing letters?):  

Dear Principal,

As the school year draws to a close, I just wanted to take a moment to express my appreciation for the support that my daughter received during the course of the school year. I recognize that we take a slightly different approach than a lot of families in how we manage her type 1 diabetes (“T1D”) care and I would be remiss if I didn’t acknowledge that the impact that your support had on her, both in the short and long term.  

Individuals living with T1D are at an increased risk of multiple complications, including retinopathy, neuropathy, nephropathy, cardiovascular disease and a host of other issues. A lot of these complications can be the result of high blood glucose levels.  Additionally, for children with T1D, there may be long-term risks, particularly for brain development, if blood glucose levels are elevated for extended periods of time.

I’m happy to share that during the course of this school year, her average A1C was around 6.3. The American Diabetes Association has recommended an average A1C of 7.5 or under.

This is a direct reflection upon your support of our management of my daughter’s diabetes care.  

Additionally, my daughter was able to maximize her time in class and with her friends.  In fourth grade, the first year after her diagnosis, she was frequently in the office in order to manage her blood glucose levels.  This had a direct impact on her learning, which was reflected in her grades and carried over into her fifth grade year.

As we close out the year, please accept my sincerest thanks to you and the staff, particularly to the school nurse.  She exemplifies what a T1D Mom hopes to see in a school nurse. She is knowledgeable, compassionate and dedicated to the success of our children.  I would also like to say thank you to the teachers and coaches who were fundamental to her success throughout the school year.

I look forward to continuing to partner with you next fall in support of my daughter’s success.  Until then, I wish you health and a little bit of peace and quiet before the next school year.

Kind regards,

I always take the approach with the school that I want to work with them in support of my child.  When we sit to talk about her 504, I tell them what accommodations she needs and a suggestion for how it may work, but also have taken the position that I am open to their suggestions because I want don’t want it to have a negative impact on the classroom.  

As an example, in 5th grade, I had asked for my daughter to record her blood sugar on the top of her tests.  This was used in connection with her 504, which has a portion that indicates she is allowed to retake tests if her blood sugar is out of range.  I suggested she just write it at the top of the page. The teacher got wide eyed and told me that their tests were mostly online. We talked it through and decided that after the kids recorded their names on the test, there would be a spot for them to record their number.  The kids were number 1-24 (for cubbies, line placements, etc). So other kids would say, “My name is Johnny and I’m 12” or “I’m Judy and I’m 19”. My kid would simply record her blood sugar number instead. Compromise reached. Last year, I would just review her Dexcom data.

Each year during conferences, we talk through how she is performing as a student and then spend 3-5 minutes talking about her diabetes management.  The vast majority of the time, the teachers say they don’t even know when she’s doing something for her blood sugar.

We are finding ways to leverage technology, like Dexcom and texting, as well as dynamic management decisions and an attitude of working with them in support of my child.  I hope you find support and success in your school year as well.  There are definitely challenges, but I encourage you to know your rights, know where to find resources (like from the American Diabetes Association) and be an advocate for your child – and for the kids who will come after yours.

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