Last fall, we were prepared to send our kiddo to school. His disability and medical care required the presence of a nurse, and we were initially assured by the school system that his home nurses would be welcome to accompany him to school. Given the complexity of his medical issues and his communication delays, it was important to us that he be with someone who knew him, knew how he communicates, and knew his signals for respiratory distress.

Our first few meetings with the IEP (Individualized Education Plan) team went well, and we moved forward with our plans to send our son to preschool. However, we were later called in for a meeting to discuss a change in plans. The school system would not allow our son’s home nurses to accompany him to school. Instead, we had to work with the system’s nurses and the agency they employed for transport nursing.  This change in the arrangement toppled our plans.

Sending our son to school with transport nurses who neither knew him nor were able to communicate with him effectively was too risky for us, especially given the urgency of his respiratory needs at times. Furthermore, sending him to school with nurses that we would not be able to interview, select and vet the way we do for our home nurses was simply not okay with us. Even worse, we would have to make significant changes in our home nursing schedule and lose our son’s in-home speech, occupational and physical therapies, all while dealing with the instability caused by having to manage the attendance and effectiveness of nurses at school and on transport. Being backed into a corner to make those choices just days before the start of the school year was unpalatable, so we elected to keep our son home. The school sends an itinerant teacher and the school therapists to our home each week to work with our son. This was not our plan.

A bright child who is academically motivated even at the age of three, our son needed school for the social interactions and the structure that will later benefit him in school. We felt disappointed in the school system for the bait and switch, which was apparently related to union issues with their own nurses. We felt sad that our son would not be able to participate in preschool and learn in a new environment. However, we also realize that a year from now, his medical condition could be vastly improved, which might eliminate the need for in-school nursing care and allow him to go to preschool at the age of four. Overall, we made the choice that was best for him and for our family.

Working out the details of an IEP was a process for which we were prepared. Having been a teacher in the past, I knew the level of detail that we needed to include. My husband, who has a graduate degree in Early Intervention, also knew the process well. What we weren’t prepared for was a school system that changed the terms of the agreement. While the staff and therapists were supportive and helpful, the administration drew a hard line. With the help of legal experts, we could have potentially won this fight, but we felt that at that time, it wasn’t worth the time and energy it would take. Now we are planning for year two of preschool. Knowing the obstacles we will face places us in a better position this year to ensure that our son will receive the in-school support he needs and that the school system will honor their agreements to make sure he has that support.