Talking to a good friend recently about an issue with school, I asked her “Is Diabetes making me a bi#@!h?” Her answer “yes, but I think you have to wear THE SCARLET B for your son’s sake.”
How sad is that? 2014 and am currently being a Bi#@!h to make sure my son can participate in extracurricular activities in middle school. My son has type 1 diabetes. I have honed my ‘Bi#@ch’ skills for the last three years: being a Bi#@@ch to get a 504 plan, being a B$#@ch so he can have food or drink on the bus when his glucose was low, being a Bi#@ch so he could get food after receiving insulin, and being a Bi@$#ch so he could be SAFE in school, where he spends the majority of his time.
Before diabetes I was the happy-go-luckiest girl in the school district. I was in the home/school association, a volunteer, and a troubadour for how fantastic my daughter’s school experience was. I am still all those things, except the happy-go-luckiest part. My son, and type 1 diabetes came along, and I had to let go of the happy-go-lucky and mix in advocate, lawyer, medical police, and wearer of THE SCARLET B.
Since the first year on the school carousel with diabetes—going round and round regarding his medical needs and school’s responsibility—Frankie’s school life has gotten better. A certified diabetes educator was brought in for school staff, he is allowed that juice box on the bus, and he is managing his own diabetes in the classroom to prevent getting insulin and not the food it was given to cover. Frankie’s teacher this year—over the top FANTASTIC! The faculty in the school building from the Principal on down—OUTSTANDING—but …dun, dun, dun,duuuuuunnnnnn…when it comes to administration –always a hurdle.
For the last 3rd years in a row, I have asked for a plan to be listed on Frankie’s 504 for his participation in after school activities. Last 3 years-DENIED. I accepted that because he was in elementary school and had other options. Frankie is now going into middle school. His sister is already there, and talks incessantly about all the after school fun she has in clubs and activities. Frankie—heading into 5th grade is planning to do the same. The difference-Frankie needs a ‘diabetes’ trained adult at these activities in case of a diabetes emergency—extreme low blood sugar. His pancreas doesn’t work because his immune system wacked out and shut it down. (he does not have diabetes because of what he eats or drinks or lack of physical activity. He was 6 when diagnosed with type 1 diabetes.)Without an adult to administer glucagon if he passes out, or assist him in getting that juice box in his system when he is a fumbling mess because his blood glucose is low—Frankie can’t participate. So what’s the problem? I haven’t the foggiest idea. For several years, I have been given the ‘Kool-Aid’ of “some events are not school sponsored events.” Lots of parents get that and accept it. I didn’t drink it-and instead did some research. Come to find out, if a school advertises an activity, lends their name to an organization, or in any way gives assistance-like busing, use of buildings, promotion of activity/clubs—no matter what organization is running it–the school has the final responsibility to make sure ALL students can participate. Huh? Why are they failing to do this then? Why does administration cancel our meeting (with less than 24 hours notice) to discuss Frankie’s middle school plan-specifically because of the request for a trained adult at after school activities because, I quote, “The district office is not ready and wording.”? What is there to review? Am I the first wearer of THE SCARLET B to take a look at laws and regulations? To ask questions?
Ok, I get it. My time is not as valuable as theirs. Who cares if I had taken an UNPAID day off of work to attend the meeting (which was scheduled by the district 3 weeks prior) one person at the District Office is not ready so – CANCELLED!! (If I couldn’t come—for whatever reason—would the meeting have been cancelled or held without me? We will never know, because I would drag myself in there no matter what because it is about my son and his success as a member of his school community )I know the regulations—504 decisions are ‘regulated’ to be TEAM decisions—so why is the meeting cancelled because one person at the District Office “is not ready and wording.” I get they need to consider their legal side-and want to get the ‘wording’ right. They are probably thinking of the budget too—but there is $$ set aside in the school budget to provide accommodations for kids who need them. I voted YES for that budget and plan to vote ‘YES’ May 20th on the next one.
Why aren’t they following school district policy? Here it is, hot off the district website Policy 3000/Number 3300:
Access to School Programs by Students with Disabilities:
Each student with a disability shall have equal opportunity to participate in the full range of programs, services, and extracurricular activities, which are available to all other students enrolled in the District, to the extent that such programs, services, and extracurricular activities are appropriate to the student’s educational needs.”
It seems the district stays just on the edge of regulations. I remain wearing THE SCARLET B.