Over the past year, I have been advocating for a change in how my local school district handles Continuous Glucose Monitor, or CGM, monitoring for students with Type 1 diabetes.
For those who may not know, Kay was diagnosed with Type 1 diabetes in June 2024. She also has Down syndrome, autism, and hearing loss in one ear. Because of her age and disabilities, she is not always able to recognize or communicate when her blood sugar is dropping or rising. My goal has always been to ensure that the adults responsible for her care during the school day have the tools they need to help keep her safe.
After reaching out to Follow T1Ds (a nonprofit organization that advocates for safer diabetes care in schools), I was connected with an Assistant United States Attorney who volunteered her time to review Kay’s situation and investigate our concerns. Over the past year, she has spent countless hours working on our case, communicating with CCSD, and exploring whether the district’s practices align with federal disability laws. Her dedication to helping our family has meant more than I can put into words.
Last week, I spoke with her on the phone, and she shared that it would be her last week before leaving her position. At the time, it sounded like she would be sending one final letter to CCSD regarding Kay’s situation before her involvement came to an end.
I had been feeling a little discouraged knowing that someone who had spent so much time reviewing our concerns was leaving. At the same time, I completely understood that this was out of her control, and I have been incredibly grateful for everything she has done for our family.
After thinking about it for a few days, I decided to send her a brief email thanking her again and asking if she would be willing to send me a copy of the final letter she planned to send to CCSD. My hope was simply to have it for my records as I begin looking into other avenues to continue advocating for Kay.
Then I received a reply that gave me a little more hope than I was expecting.
She shared that she had a meeting with CCSD’s General Counsel and that they would be receiving letters for all of the cases she currently has pending with the district, including ours. She also shared that she was trying to convince her leadership to keep these cases open while decisions are being made regarding how Title II ADA cases will move forward.
Reading those words reminded me that advocacy is rarely a straight line. Sometimes it feels like you are making progress, only to run into another obstacle. Then, just when you think a door is closing, another one cracks open.
I still do not know what will happen with Kay’s case. It may continue, it may be transferred, or I may ultimately have to continue this journey through other organizations and advocates. For now, I am choosing to be hopeful while also continuing to prepare for whatever comes next.
At the same time, I have been learning so much about advocating for a child with multiple disabilities. This has never been about making things difficult for the school. It has always been about making sure Kay has the support she needs to be safe while she is away from me.
As I prepare Kay to start at her new school, and meet the school nurse, I will continue these conversations. I am also gathering resources, organizing documentation, and learning more about disability rights and diabetes care in schools. Every conversation, every document, and every step forward helps build a stronger foundation for advocating not only for Kay, but hopefully for other children who may face similar challenges in the future.
There are still a lot of unknowns, but one thing remains certain.
I am not giving up.
No matter how long this journey takes, I will continue to advocate for Kay, continue asking questions, and continue searching for solutions that help keep her safe while giving her every opportunity to succeed.