There is no crying in Lacrosse…

Last night was a beautiful evening to suit up for some lacrosse!

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We have been placing the POD (omnipod-insulin infusion device) a bit higher up on his torso so it’s protected by his gear when he plays. Last night, in the scuffle that is lacrosse, Frankie’s pod took a direct hit from a stick that went up under his gear, and ended with a player pile up—Frankie on his back—pod taking a bounce on the ground. He stood up and looked across the field right at me, reaching behind to his back for the pod. In that one look, the silent communication between parent and child with diabetes, he told me that something was up. Then I got the hand signal—flat palm up-the ‘don’t need you’ sign. Another communication we have—signals from the field if he needs us. Hard as it was—I respect the signal and stay where I am.

He plays on-sending more signals now and then-the thumbs up-‘I’m okay sign’, the flat palm-‘don’t come over’ sign, the swishing hand-‘my pods messed up’ sign, and right back to the flat palm-‘don’t come over’ sign. If I didn’t get the signals—he knows I would come to the sidelines—he respects that I worry—so he sends them—both to keep me in my seat and to let me know he is okay. Hard as it is—I stay in my seat—I respect him back—his diabetes, his body, his lacrosse game. Frankie has earned this trust and respect—at age 10—he doesn’t mess around with his diabetes—he never has—and these signals were his idea. I am jittery in my seat and thinking about how much older he is than his years.

Finally, game over! Frankie makes his way to me, stripping off all his gear. I have out the glucometer-to check his glucose level. His face is stoic-as he takes his BG he says “will you grab my gear-I’ll be in the car-we need to go Mom” a tear escapes. He sucks a breath in-stoic face comes back. BG 107-great! He grabs an after sports drink-because that 107 will be a dropping number after all the activity, and his kit- heads to the car. I pack the gear-get to the car—where full on crying is taking place. “Drive!” he says. “I need to check the pod” I say. “It’s coming off, please just drive.” Frankie responds.  His buddy comes over to ask if Frankie’s okay- “yes, yes-the pod just got knocked” I say. Frankie says “Drive!” I put the car in gear and go.

Car conversation is tough—through tears—“pod got ripped half off, it hurts, I’m getting a headache.” We make it home, and seeing the house Frankie calms down. A check of the pod—the needle didn’t come out—just part of the other side—we need to tape it down—and watch to make sure it’s working still. Frankie eats, insulin delivers successfully! Yahoo! (Okay-several overnight checks it is!)

A few Tylenol for the headache and Frankie tells the story to Dad “I wanted to-but I didn’t cry. I didn’t want them to think I couldn’t play cause of diabetes.” —ending with

“There is no crying in Lacrosse.”

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THE EDGE OF REGULATIONS AND THE SCARLET ‘B’…

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.