Cystic fibrosis can be intimidating: there are no outward physical changes, no mental deficiencies. Yet internally, a person with CF struggles every day to gain or maintain a foothold on his or her personal health and well-being. And it is this fear of the unseen and unknown that can be such a challenge to success with a school accommodations plan. During the three months we prepared to send our son, Silas, to school, our biggest challenges became meeting times, helping others understand the needs of a person with CF and distributing medications. Because Silas is our school district's first student with CF, we had the additional challenge of creating standards in the district for others with unique medical needs.
1. Preparing and Scheduling Meetings
Public schools keep an orderly system of hall passes, sign-out sheets and classroom bells, and we wanted to inform as many staff members as possible to avoid any misperceptions about Silas “breaking” school rules. After writing Silas' 504 plan, the next challenge was getting the right staff members together for an informative meeting and Q&A session.
We decided to include the principal, classroom teacher, program director, nurse, both classroom aides and the program secretary, but it was difficult to coordinate everyone's schedules. We were attempting to meet over the summer before the school year began, and administrative meetings, summer break and fall school preparations made coordinating our plans a little more difficult. After a month of discussions, we decided that, instead of getting everyone together for one large meeting, we would schedule three separate meetings and communicate through email to discuss the plan details.
2. Explaining CF
Most people haven't encountered CF. Fewer have heard of it. So our next big challenge was helping everyone understand the intricacies of CF. For each meeting, we wanted to be sure that everyone would get the same important information. So aside from Silas' 504 plan, we prepared a binder with background materials on CF that could be kept in the classroom for any substitutes and aides to refer to. We made index cards with images of Silas' medications and instructions on how to administer them. We also brought in his medicine with the correct prescription labels, so everyone could see what he would be taking at school. In addition, at each meeting, we gave a short presentation that explained the details of cystic fibrosis. Visual examples helped us explain CF, how it affects Silas and the accommodations the school would need to make for Silas' safe transition to school.
After explaining CF to members of the school administration, their responses ranged from confusion to sadness. One person commented that Silas “looked so healthy.” It was difficult to see everyone's reactions, but it was also important for us to acknowledge these thoughts, be understanding and let others have those feelings so they could begin to understand the importance of their new role at school for Silas.
We responded empathetically, but we also made sure that the staff's initial intimidation and fears didn't overshadow what we needed them to do for Silas. We took their questions and concerns seriously, even when someone suggested we hire a nurse to watch Silas for overheating in gym class. Silas may need to rehydrate more often or occasionally sit out activities because of his CF, but we assured them that a personal nurse would not be necessary. After the meeting ended, the staff's biggest concern was: who would administer Silas' medications?
3. Who Gives the Enzymes?
Typically, the school nurse would give enzymes, but our situation was a little more complicated. We were shocked to discover that Silas' school nurse would be available at Silas' school only two days a week because she traveled between all three schools in our district. We suggested an alternative: his classroom teacher could be trained to give Silas his enzymes. We also proposed that he take them on his own before his meals. The school again recommended a private nurse, which parents of other children with special needs in the district had arranged in past situations.
We were at an impasse. We thought that having an on-site nurse following him to his daily activities was unnecessary, especially because Silas is independent at home. He takes his enzymes and his own breathing treatments. We also worried that an adult following him might draw negative attention from students who might see this accommodation as a way to bully Silas. We stood our ground and, after three more weeks of negotiations, the school agreed to rearrange the nurse's schedule to ensure she or the principal could provide Silas his enzymes. After Silas' first week of school, the program director felt comfortable enough to offer to give Silas his much-needed “food helpers.”
Although the school was initially challenged by Silas' needs, we believe that our determination to get Silas what he really needed while in school will benefit both Silas and students with special needs in the future. And we are grateful that after some education and open communication, we have a team that is willing to fight CF alongside us while Silas attends public school.