Yesterday might have been a normal day for you. But for Madeline, it was life changing. For the first time in her public education, she stuck a bottle of enzymes in her backpack before going off to school and administered the enzymes to herself at lunch. So simple: sit down, take enzymes, eat lunch. But until yesterday, that was against the rules. This is something we've been fighting for the past six years, and getting this medical accommodation granted is one of my proudest accomplishments.
At age six, Madeline attended her first full day of school as a first grade student at our local elementary school. As all the other first grade classes lined up for the cafeteria, Madeline stopped at the nurse's office to swallow her enzymes, essential medication that makes it possible for her to digest food. Without taking enzymes before every meal and snack, her body is completely unable to process what she eats, leading to severe stomach cramps and poor weight gain, or even a bowel blockage. Enzymes work best when they are taken immediately before eating. They are critical for her, and harmless to anyone else. (Everyone else just carries enzymes around in their pancreas. Easy.)
That first day of first grade, the nurse was ready. Madeline took her enzymes and then headed to lunch. Later that week, however, things didn't go as smoothly. By the time she took her enzymes and got to the cafeteria, the line snaked out the door. Her classmates were already settling in at their tables, but she dutifully joined the end of the line and waited to get inside. By the time she sat down, there were only a few minutes left to eat. Not good for a child who needs to consume 150% of the calories of an average person simply to maintain weight. Not good for a child who has already taken enough enzymes to digest a full meal but is now essentially eating a snack.
After we discussed it with the school, Madeline was given permission to go to the front of the line after taking her enzymes. After all, it was the trip to the nurse that was slowing her down. Even though the nurse tried to prioritize Madeline, she was sometimes busy caring for other students and Madeline was forced to wait for a few minutes, cutting even further into her precious lunchtime. Worse, she was spending that time in the nurse's office in close proximity with sick children, and as a cystic fibrosis patient, even a minor illness could lead to missed school, a hospitalization, and even long-term lung damage.
The next time Madeline encountered a line for the cafeteria, she started up to the front as instructed. A cafeteria aide immediately yelled at her to return to the back of the line, to her rightful spot as a latecomer. If something similar happened today, Madeline would speak up for herself. As a tiny six year old in a big new school, however, her rule-following heart and respect for authority won out. She moved to the back of the line. She got to the table later than most of her classmates. She didn't finish her lunch. And a few hours later, she had a stomachache.
Someone at the school later let the cafeteria aides know to watch for Madeline, and she was given a pass to show anyone who questioned her cutting in line. She was also given a five-minute head start so she could get her enzymes from the nurse without losing any time from lunch, and a buddy to go with her to make it more fun. She was even granted extra time to eat lunch if necessary, but what first grader wants to miss out on class activities just to stay behind and eat? Everyone at the school was beyond helpful and kind. But if Madeline had been allowed to administer her own enzymes at school, all of that could have been avoided. Sure, she was only six, but she had been swallowing her own enzymes since she was 12 months old and was already perfectly capable of remembering to take them before eating. In fact, she had consistently done so the year before as a student in a private kindergarten, and she was also used to handling her own enzymes in church classes, on playdates, and at home.
It's not that we weren't requesting this accommodation. As part of Madeline's 504 plan, which outlines any necessary health accommodations, we asked that she be given permission to self-carry and self-administer her enzymes. The answer was always a resounding no. We asked in first grade, we asked in second grade, we asked in third grade, and so on down the line. No, no, no, no, and no.
But why?
We were always told that self-administering enzymes was against Pennsylvania state law. This is not accurate, and there are scores of children throughout the state taking enzymes on their own, but it is the answer the state Department of Health (DOH) gave whenever the school district asked if it was okay to permit someone with cystic fibrosis to self-administer enzymes. My understanding is that when we pushed further, district officials consulted with their solicitor and were essentially told to follow the instructions they had received from the DOH. And when we asked for legal justification to back up the DOH's claim, the DOH simply followed up with the same circular logic they had given us before that didn't actually say that self-administration of enzymes was not allowed.
The exact legal reasoning behind all of this isn't necessary or interesting to explain here, but it was a frustrating cycle that led to lots of meetings and phone calls with the district, letters from Madeline's pulmonologist, tears from me, an attempt to schedule a formal mediation session through the state, more tears, a huge 504 meeting with both the school district and Madeline's care team present (thanks, Zoom!), and yes, even our own consultation with an attorney. Madeline's pulmonologist and dietitian went above and beyond to advocate for her. After all of that, the school district was willing to go back to their own attorneys and re-examine the issue. Apparently they ended up consulting with *several* sets of attorneys, and although I have no idea what went on during those discussions, the end result was a glorious phone call that I received on Monday: Madeline now has permission to self-carry and self-administer her enzymes. Hallelujah!
I want to emphasize that we worked with very kind people in the district who simply felt the matter was out of their hands once they received (poor) advice from the DOH. We especially love and appreciate both school nurses that Madeline has worked with over the years, and the willingness of Madeline's teachers to be flexible and creative to make her trips to the nurse's office as simple and nondisruptive as possible. They really are the best, and the self-administration question was not at all up to them.
What astounds me, however, is that for six years we have repeatedly asked for the same thing using essentially the same arguments, and the same solution has been there all the time. And yet it took this monumental effort to push for a change, and to get the district to believe in us enough to challenge their own legal counsel to be more thorough. If the district hadn't done that, we would have taken the next step, which is a formal due process hearing wherein a judge essentially hears arguments from both sides and makes a binding decision. I am (somewhat) confident we could have won with an attorney at that stage, but it would have cost a whole lot more time, money, and goodwill.
It would have been so easy to give up a thousand times along the way and say: That's just the way it is; some things will never change. But check out these life-changing things Madeline can now do (or will be able to do in the future), simply because we never gave up:
- Eat lunch at school without going to the nurse's office
- Take an extra enzyme mid-way through the meal if she realizes she's eating more than usual or gets seconds
- Eat a snack without taking time out of class to go to the nurse's office
- Avoid being unnecessarily exposed to germs each time she takes her enzymes
- Optimize the effectiveness of her enzymes and feel healthier
- Eat that random treat a teacher or friend gives at an after-school activity or sports practice, rather than saving it until she gets home because the nurse is no longer available
- Attend a school sleepover or dance and eat any of the refreshments without asking special permission or slipping away from her friends
- Visit a friend's house after school without me dropping enzymes off a day in advance so they are available just in case they want to eat a snack
- Go on a field trip or other school-sponsored event without having a nurse tag along every moment (this will increasingly become a big deal as she gets older!)
- Be able to eat in the event there is a school emergency that prevents her from coming home or getting to the nurse at the usual time
- Eat whenever the heck she wants to eat
I'm sure there's more. Food is so central to our existence. But in the end, I really only know two things: (1) I'm super happy and grateful that Madeline now has permission to take her enzymes wherever she goes, and (2) I can never move to a different school district and go through this process again.
