One of the most difficult lessons my husband and I have had to learn during our son's journey through cystic fibrosis is to prepare as best you can and then get out of the way so your child can experience life.
Our youngest son, Silas, watched his brother, Sebastian, wave from the bus window morning after morning until finally, one day he asked, "When do I get to ride the bus?" We didn't have an answer. We had seen neighbors' and friends' children sniffly with colds as they moved through daycare and schools, and Sebastian's elementary school even closed for a few days when they discovered a child with whooping cough. Silas is bright, sociable and knowledgeable about his CF, but we both feared the worst if we sent him to school: extra damage to his lungs. As the deadline for school got closer, we reluctantly decided to send him to school. And the summer before Silas turned 5, I found myself daunted, attempting to navigate the system and ready a 504 plan to ensure my son's good health would continue while he attended school.
Facing Our Fears
A 504 plan is a document that outlines how a school will accommodate students with special needs. We had heard of 504 plans before and we knew ours would detail all the care our son would need during his time at school, but preparing it was intimidating. We wanted to be sure we could cover everything from taking enzymes to educating classmates and staff about CF, and we worried we might forget something, so the best place we knew to start was with our CF care team. We called our CF clinic's social worker and asked her to forward a copy of what the team typically recommends for school accommodations. We received recommendations and sample plans from helpful parents who'd already been around the block with these issues. We even read laws about accommodations in schools for 504 plans in Pennsylvania, our home state. After almost a full week of excessively compiling almost 50 different bulleted ideas, we were ready to start writing our son's plan.
The 504 Plan Process
We considered a strict plan with a numbered list to include the accommodations our son would need, but instead we realized that we wanted them to get to know our son, his personality and his independent nature. We introduced our son by including the hobbies and activities he enjoys, as a prequel to them meeting him. We included images of my son so everyone could put a face to a name -- instead of focusing only on his CF.
We had to do more than just list what we thought our son would need. We also personalized his 504 plan by adding descriptions to his accommodation requests. We explained the benefits of his necessities and made sure we stressed the importance of how CF would affect our son directly. We had to communicate those needs with strong evidence, so it definitely helped to have a list of recommendations from the CF clinic to prove why our child might need an all-access pass to a private restroom, why he shouldn't use the school's water fountain or why an air conditioner is really important for classroom use. After a good look at all of the research we did, we took into account these categories:
- Lunch and Snack Time Enzymes
- Exercise and Extra Salt
- Classroom Practices
- School Rules and Contact with Others with CF
- Hospitalizations and Home Support
At the end of the 16-page plan, we included contact information, helpful videos and educational lesson plans for his teacher and added a list of resources for everyone to find out more about CF.
Although it took all summer consulting with our CF care team, setting up meetings and emailing paperwork to the school administration to make sure that everything was in place, we finally felt assured we were ready to send him to school. Sometimes we still wonder if we made the right decision for him by leaving him in the school system's hands, but we realized that these are normal fears when a child begins a new phase in life. Thankfully, with our 504 plan in place and with the help of some receptive and kind administrators, we know that there is a protocol that everyone will follow to be sure that our son is best taken care of right from the start.