The Benefits of Informing Your Child’s School about Their Hydrocephalus

By Sarah Delahousse, HA Volunteer

A year before my son started kindergarten, I saw a link in my email to view a video featuring then-HA Board of Directors member, Debby Buffa, titled, “Through a Mother’s Eyes: School and Hydrocephalus.” Before I watched this video, I assumed that all I would have to do is note that my son had hydrocephalus in the registration form and that the teachers and principal would be automatically notified. He, thankfully, did not have any physical or learning disabilities, which lead me to believe that it would not be a major undertaking to inform the school about his condition. Thus, I was surprised to learn from that video that I should meet with his teachers and explain the condition to them. I also asked my mother, a retired elementary school teacher, if I should take the time to tell his teachers about his hydrocephalus. She said that I should because they had a right to know so that they would better understand it and that they would be more prepared to deal with a shunt failure if it ever happened at school.

I dutifully listened to this advice and went about informing my son’s school once he was enrolled the following year. The process was more involved than what Ms. Buffa described regarding his elementary school because it was much larger than her daughters’ elementary school. (To be fair, she did say that it was more difficult to inform her daughters’ middle school because she had to notify more teachers.) However, it also helped me determine the school’s quality by judging how the teachers and administrators reacted to the news. On the day we went to the school to register him, I told the principal and the secretary that he had hydrocephalus, and they immediately acted concerned. The principal had the vice principal who dealt with special needs students come down, and she asked if there were any accommodations that the school needed to make for him. I reassured her that the only thing that he could not do is hard contact sports such as American football. She firmly replied that elementary school students do not perform such activities. The fact that these administrators cared about my child and wanted to know if he needed accommodations gave me confidence that they felt this way about all of their students and were not afraid to deal with his condition.

Meeting with Relevant People about Hydrocephalus at a Large School

However, this encounter was only the beginning. I went to the Kindergarten Orientation the following month and found out that I would not know his teacher’s name until the first day of school. I raised my hand during the Q and A and said that I would have to know earlier than that because my son had a medical condition that his teacher had to know about. I subsequently had to meet with that same vice principal at the end of the orientation arrange a meeting with her, the principal, and his teacher on a later date, which I did. On the day of that meeting, I explained what hydrocephalus was, how my son acquired it from meningitis as a baby, how many surgeries he had, how miraculously healthy he was, what the symptoms of a shunt failure are, and I stressed that they should not treat him any differently as any other child. I also gave his kindergarten teacher a copy of HA’s Hydrocephalus: A Guide for Teachers in which I highlighted the relevant sections and included a Post-It note directing to only read those parts. His teacher took these materials, and the principal, to my astonishment, told me that she had never had a meeting like that before and that I would have to inform his enrichment teachers (he had five) and the school nurse. While I was happy to bring hydrocephalus to the school’s attention, I suddenly had a new set of people to contact and had to figure out how to do it.

Meeting with these people took some planning but was manageable. The nurse was happy to talk to me during school hours and put the About Hydrocephalus – A Book for Families in his file. It was tricker informing the enrichment teachers because my son saw them once a week and on different days. The school did not give me their schedules, their emails were not listed on the school’s website, and I did not want to face the prospect of scheduling several meetings on different days. So, I resorted to giving each one a copy of the Guide for Teachers and spending 5-10 minutes explaining my son’s situation to them when I saw them on Meet the Teacher Night. They all greatly appreciated that I took the time to tell them. I ended up telling the school counselors about my son too because they expressed interest in knowing more about it.

The head counselor assured me that I would not have to update his teachers every year because the school would. This was not really true. The head teacher from the previous year would pass the Guide along to the next head teacher, but no one would explain to them what hydrocephalus was. So, for first and second grade, I would meet with the head teacher after school the second or third week after the semester started and would answer any questions they had about hydrocephalus.

Meeting with Relevant People about Hydrocephalus at a Small School

Before my son started third grade, we moved, and he had to switch schools. This one was much smaller than the first one, and the process was much easier. I had not even finished filling out the registration forms at the school when I was asked to meet with the principal, my son’s third-grade teacher, his gym teacher, and the school nurse. I gave his third-grade teacher the Guide for Teachers with my notes during the meeting. The conversation was productive, and I recognized the same care and concern that I saw in the teachers and administrators at his old school, which put me at ease. I still had to inform the fourth-grade teacher about his condition the following year, but I had become accustomed to this process and was met with the usual appreciation.

Meeting with Relevant People about Hydrocephalus at a Middle School During a Pandemic

My son transferred to middle school for fifth grade, but I was unsure about how to communicate with the school about his hydrocephalus because COVID made it impossible for me to meet with anyone in person. I resorted to sending concise emails to his teachers and principal detailing my son’s experience, what hydrocephalus is along with the signs of a shunt failure, and that he should not be treated any differently than any other student. I included a PDF of the Guide with the same directives on which sections were relevant for them to read. The response was immediate and very positive. Some replied by email, his gym and head teacher called to get more details from me, and his principal called without scheduling ahead of time. She even took the initiative to forward my message to the school nurse since her email was not publicly available before she contacted me. I sensed that they understood my son’s condition and that they were glad that I took the time to tell them about it. I will likely do the same process after the pandemic ends because it worked out so well. More importantly, I am more confident than ever in my son’s health and well-being at his school because his teachers and principal exhibited the same care and willingness to learn more about hydrocephalus that I have come to expect from great educators and school administrators.

Tips for Notifying Your Child’s School About Their Hydrocephalus

• For kindergarten, meet with the principal, vice-principal, head teacher, and any relevant people such as the nurse before August. The school should have plenty of notice since your child will be newly enrolled, and the teachers will be very busy planning their year and setting up their classrooms during that month.
• Meet with teachers in subsequent years about 2-3 weeks into the fall semester.
• Come prepared with materials to help illustrate or further explain hydrocephalus.
• Direct them to the information that is relevant for them to know.
• Get to the point and be constructive about your child’s condition and needs.
• Answer questions as honestly as you can and refer them to hydroassoc.org for more information.
• If your child is in after school care, tell the director and teachers. They should know too.

Remember that you are your child’s advocate. Their school has a right to know about their hydrocephalus and how to best meet your child’s needs. They should also be receptive to you. If they are not, you should consider finding a school that will be.