Advocating For Your T1D

Well it's been a while since I have written. A lot has happened in this past year, both with Lily's diabetes management and in milestones. She started daycare and we had to navigate training strangers to keep our daughter alive and well every day (who by the way are some of the best people that loved her more than I could have imagined). We moved from the only home she remembered us living in. The home I found peace and healed, we had to say goodbye to. We moved in with my parents a month before starting Junior Kindergarten and had to get comfortable quick so we could focus on getting ready to start school. And then we adjusted to our new routines and our new home and Lily is thriving (as she does every time we have something new come our way).

I've made every decision based on Lily since she was born, and pushed myself out of my comfort zone to make sure that she can remain in hers. I'm proud of the Mom that I am to Lily and know that I will always do everything in my control to make sure she is as happy and healthy as possible. So let me tell you about the long and wild ride that starting school for a child with diabetes can look like...

I know that I can be a bit unconventional at times, and tend to live by the “ask for forgiveness, not permission” mantra, but my attitude while picking a school for Lily surprised even myself. I contacted every school in our town, and the towns surrounding. Most of them were happy to set up a tour and to sit down with us to chat. Some responded by asking if we even lived in their district. I knew that it's not easy to go to a school not in your school zone, but I also knew I would break any rules needed, contact anyone and everyone and fight for the right school. The Taurus in me knew that if I found the school that I felt she would be safe and happy at, there was nothing that would stop me from getting her in there. I didn’t realize at the time that most people just check what zone they live in, and send their kid to the school they are assigned to, so most of the staff was probably a bit perplexed to be receiving a phone call from someone saying they are touring public schools and want to meet with their principal. Regardless, I lied to each one (whoops) saying that I am moving shortly, and wanted to chat with the schools in the different zones I was looking at. I also knew that I would literally move if that was what was needed, so maybe it wasn’t a complete lie…

We started the tours and one-by-one ruled out each school. I know we are working with unusual circumstances and her health was our number one priority, but the feel of the school and the principal meant a lot to me too. This person would be someone I would need to be on the same page with and have similar outlooks on Lily's health and happiness. And the building is where she would be spending 5 days a week for the next 8-10 years. I'm big on good vibes, and I know pretty quickly if I get good vibes from people and places. If a school or principal didn't give me good vibes, then my kid isn't going to school there.

Some schools we knew pretty quickly we wouldn't be sending Lily there, some we sat with the principal for hours and left having pros and cons. Some told us that they have another child with diabetes which made us feel good, and a lot didn't. We were scared to go in to unchartered waters with a school when they would be responsible to keep our favourite person alive every day. Some shocked us with how little they were willing to work with us on things. Being told that we would not be able to have contact with the teachers due to their 'no cell phone' policy was mind blowing. To me, all I heard was, "I don't know much about this disease or the risks, and I am going to put the rules above her needs."

I knew we found our school when the principal was going out of their way to call me and ask questions and reaching out to all available resources. We met with the teachers and it solidified everything we were feeling. They assured us that we would have an open line of communication and that we could be as involved as we wanted in her care. It's terrifying sending your child to be medically cared for by strangers every day, so this was everything to me. I needed to know that I could check on her and know that she was ok at any time. I think every parent that has a child with extra needs should be given that comfort, and I wasn't willing to give that up. We talked a lot about what we wanted school to look like for Lily. I explained I want her to have the most inclusive experience possible while still medically safe. I didn’t want her eating lunch in the Principal’s office (one school’s suggestion), I didn’t want her missing out on recess, and I didn’t want her pulled out of the class room unless it was an emergency or absolutely necessary. I want her to feel like everyone else.

Since starting school the staff has been so amazing, caring for Lily with kindness and love. It has come with new challenges as her Mom that I know I will come across again throughout her childhood. Being Lily's biggest advocate has been easy, it came naturally as soon as I knew I was pregnant. But pushing myself out of my comfort zone and standing between her and other adults, or having tough conversations with adults has been a wild ride. As a baby I physically slapped hands away and would put my body between her and people I did not want touching her. As a toddler I have grabbed her from people when she did not want to be held, or had tough conversations about listening to her. For some reason I found it really hard to ask her teachers to do something differently though. I’m not sure if it was because I knew they were doing what they thought was best, and they had good intentions, but it was really hard for me to say anything.

I worry a lot about Lily being bullied for her diabetes, and missing out on things in school. When I was growing up there was only one student with diabetes, and she was never with the classmates. My only memories of her are when I would notice they were checking her blood sugar off to the side and chatting, or when she would be having a snack or juice - again off to the side. She was with her worker all the time, never just one of the kids. I don’t want Lily to miss out on friendships. All I want is for her to have the most ‘normal’ childhood she can. So naturally I panicked the first time one of her teachers asked me if we should pull her from circle time to check her blood sugar. Or when we got a message that she went inside with the principal to have some juice. I pictured the other kids all creating bonds with each other that she couldn’t if she wasn’t there sharing the experiences with them.

As much as I didn’t like hearing she was not with her classmates, I knew from our conversations with her teachers that they had the same inclusive mindset as myself. So instead of getting upset, I was able to clearly say “no, I don’t want her pulled from circle right now, this isn’t an emergency” when the first offer to pull her came. And when they let us know that she went inside with the principal to treat a low, I decided to kindly let them know that I didn’t want Lily missing out on recess if possible, and they explained that she did not. They sent her in to start drinking juice while the other kids lined up. It brought so much relief to me, and knowing that they looked at a situation and altered it in a way that made sense for her medically made me happy. I’m proud that I reinstated my wants for her while at school, but I am happy that I was wrong (won’t hear me say that often) in my assumption. It was a good lesson for me that I have communicated to her teachers and we have all agreed on our wishes for her care, but I am not there with them, and need to trust that I have picked the right people. I am so happy that I was a touch unhinged in the process of picking her school, because I really do feel like we picked exactly the right people for her. I know that they genuinely care for Lily, and would do anything to make sure that she is happy and healthy.

I’m not oblivious to the fact that I will still need to have uncomfortable conversations, and push myself out of my comfort zone throughout her childhood, but I am prepared. I will embarrass myself if needed, ask hard questions, and make sure that her wants and needs are heard. She only gets one childhood. I’m not going to let this disease steal that from her. I am her biggest fan, her biggest cheerleader, and will always be her biggest advocate. What a blessing that is.

Xoxo T1D Mommy