What do you do when your child feels disliked at school, not by other kids, but by the school staff? What do you do, when in a meeting with school personnel—you feel it too?
In the diabetes community we talk about advocacy, being a team with the school, educating our educators and such—but we don’t talk much about the dislike, the hurt feelings, the mistrust, and the sleepless nights. We don’t talk about the questions parents face like “What are you doing to keep your child in range?” “Why are the BG’s fluctuating—don’t you have the insulin right?” “Do you want us to follow your child around all day?” “Why are they missing so much school?” We don’t talk about schools not telling parents about homebound instruction, 504 plans, IEP plans, and interventions that could help a child with diabetes succeed. How do you get a school to understand–diabetes is so much more than insulin administration?
Don’t get me wrong here—many schools ‘get it’ and schools where there is this feeling of dislike may be few and far between—but they are out there. I believe in the ‘team’ approach, but I also know-that approach is not always present.
In the past 4 years, I have attended many school meetings as an advocate for a child with diabetes, through our families What’s Your Type? Campaign and the hurdle is always the same—a misunderstanding of what diabetes is—and that every child with diabetes is different—in how they manage the disease and how it affects them physically and mentally. I have heard—at every meeting—‘that is not how student X handles diabetes’ and/or ‘I have had a lot of diabetics over the years and why don’t you manage it like them?’
That is not how it works—and with ever growing technology to aid a child with diabetes—they way in which the disease is managed is ever growing too. I don’t think schools are keeping up.
The wheels are slow in turning—contacting the Office of Civil Rights or the State Education Department are available avenues—but for both—the process is long, and the need for exact, absolute documentation is difficult when a lot of the struggle is verbal and not in writing. It can also become a lot of he said/she said and personal for both sides—and what the child needs can get lost in that shuffle of papers and meetings. Advocacy options are slim for a child with diabetes because there aren’t many out there—you can contact the American Diabetes Association Safe at School hotline (1-800-DIABETES) and get advice over the phone and if one is available in your area-a local advocate.
Children with diabetes need a here and now answer. I don’t know what it is—but I believe Certified Diabetes Education for school staff is one answer. They can’t help if they don’t understand. That education should not be basic—it should encompass all the equipment that a child may use, how diabetes affects each child differently, and how this disease is affected by so many variables—stress, the weather, change in schedules, testing, activity level, and more. I believe school Boards of Education could be the messengers of school district culture—ensuring this certified education through Board policy and through policy—the message that all children bring differences to the classroom—-but all children matter, and through our acceptance of differences- we create a positive environment.
For all struggling to take diabetes to school successfully—do not lose hope, do not give up. Your advocacy may be the spark that lights the fire of change for students with diabetes that come after you.
Change could come from YOU.