School and Diabetes

It's back to school time and it's at times like these that I feel more thankful than ever to be able to stay at home with my kids. We started homeschooling last year when Magnus was 4 and Maybel was 3. We decided that due to Maybel's medical needs, homeschooling would make it much less stressful for everyone. We have many more reasons why we homeschool, including Maybel’s type one diabetes, which can be difficult to manage, and our overall dissatisfaction with government-regulated education, which I won't get deep into in this post. 

You may be wondering why we would choose not to send her to school- what could be so difficult that someone couldn't manage her diabetes? It’s for some of the same reasons we couldn't find quality childcare: resources and cooperation. While living in Vermont, I wanted to return to work because we had more expenses with Maybel's new diagnosis and needed to pay for her supplies and prescriptions. However, childcare was hard to find, even if there was an opening since most places operate on a waitlist. We also found out very quickly that most facilities didn't have the staff or resources to manage a child with a medical condition that needed more attention and supervision than the typical child. Some daycares or childcare facilities claimed they couldn’t accommodate these additional needs, even though daycare centers and other recreational programs covered by the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 are federally required to provide reasonable accommodations to children with diabetes. 

All public schools and many independent schools receive federal funds and must abide by the 504 plan mentioned above. A 504 plan is a formal plan that families and schools develop to help students with disabilities access learning and participate in activities. The name comes from Section 504 of the Rehabilitation Act, a civil rights law that prohibits discrimination against people with disabilities - including diabetes - in federally funded programs. The goal of a 504 plan is to ensure that students with disabilities receive a free appropriate public education (FAPE) that meets their individual needs as well as those of other students.

A 504 Plan is individualized so that you can choose the best accommodations for your child. A 504 plan might include dealing with sudden low blood sugar episodes or high blood sugar spikes that result in frequent trips to the bathroom. You never know when diabetes technology will fail so making accommodations for that portion is vital. It could also include making sure teachers and nurses all know what to do for different scenarios that may arise for a child with diabetes. Typically you would meet with the teacher, principal, and the nurse/aide ahead of time so that when diabetes demands attention at school, learning isn’t negatively affected and everyone knows what to expect. A 504 Plan can mandate extra bathroom breaks and permission to eat whatever, whenever necessary, extra absences, and more. You, as the parent, get to decide and create the plan with your school.

Technically, daycares can only refuse service to a child with a disability or special needs if enrolling the child would cause the center to change its entire program or if the child's presence is a direct threat to others. My experience while calling around to different childcare facilities was that they never came right out and said "We can't take her.” Instead, they always seemed to have a round-about way of saying "We're not equipped to care for a child with such needs." Even if I wanted to fight them to take her, I had to ask myself- do I really want to put my child's life and medical needs in the hands of a facility that isn't confident that they are capable of caring for her? I probably could have taken legal action to get them to accept her. But why? I wouldn't feel like she would be safe. I would be more stressed and worried than ever. It didn't feel right sending her anywhere after that, which ultimately led us to our decision to homeschool. 

There are additional problems with 504 plans that we don't have first-hand experience with because we never sent Maybel to daycare or school. Unfortunately, I have heard of some horror stories. I'm a part of a few groups on Facebook and Forums and recently I've seen an increase in posts of families reaching out to the type one diabetes community for support on how to move forward and what to do. Some families are struggling to get a school to cooperate in developing a 504 plan. Schools are trying to persuade them to refrain from implementing a 504 plan, being difficult, and claiming that the child requires unreasonable accommodations. I'm sure it takes work to implement something like this. Schools are known for "non-compliance," showing resistance to the plans and lack of help to implement them. One post I saw recently started with "The 504 process is a joke." This parent was so upset that the school was not cooperating and her child even missed the first week of school due to no 504 agreement. WHY!?! Why is it so difficult to get care for kids?! It's a heartbreaking situation that so many are affected by.

I won’t claim to know the ins and outs of it all. I don't know what it's like to be a teacher or a teacher that may have to participate in a 504 plan. I'm sure it's challenging and scary. I'm sure it's a disruption having a medical device beeping or making noise during class. I'm sure having a child eat snacks due to low glucose, or having to use the restroom more frequently due to high blood sugar is a disturbance. But it all boils down to keeping kids safe while learning and I often feel that gets lost. These accommodations keep the kids alive, safe, healthy, and able to continue learning. Why is there a disconnect? Why is there a gap?

I haven't even scratched the surface of this topic. I hate how difficult and scary it is as a type one diabetic mom, knowing all of these obstacles could be present in our lives. None of us need to deal with this, we already have so much on our plates. Learning shouldn’t feel like an obstacle. There is struggle in almost every aspect of our lives and we’re just doing our best. This isn't to criticize teachers and schools, I'm just sharing the daily frustrations from the perspective of a type one diabetes family. 

I will give credit where credit is due - I have heard of some schools going above and beyond to help families with their 504 plans. Some schools and centers facilitate everything so beautifully. I wish every school felt able and had the capacity to do this for all families. Even if schools and teachers feel overwhelmed, there is a way to help and solutions for common problems. For example, I read a story yesterday about a school that started a “training program” in which classmates learned how they could get involved and assist with things like gathering snacks or being a “dia-buddy.” It helps other children better understand why certain things are taking place with the child with diabetes. It also can help them learn firsthand how diabetes affects a person and those around them. 

Families and schools should willingly and peacefully be able to agree on care while learning. I truly hope that one day there won't be such a disconnect. It’s not impossible, it’s challenging but necessary.