Hello, my name is Lupe Torres!
I would like to start by thanking everyone for the opportunity to let me share my experience with the 504 plans. First, here is a little bit about me and my family. I live in the city of Las Vegas, and I have three children, two sons and one daughter. My daughter and my youngest son were diagnosed with bleeding disorders; however my oldest son does not have a bleeding disorder. My daughter was diagnosed with vWD Type I severe and Factor V Leiden and the youngest son was diagnosed with Factor V Leiden and a rare bleeding disorder very similar to VWD.
Our story began when my daughter was diagnosed with vWD at the age of thirteen. Unfortunately, my children were diagnosed during their teenage years. My daughter was attending high school and my son was in elementary school. Their bleeding disorders were very new to us we had very little information about how to protect them while they were at school. My daughter at that time had multiple doctors’ appointments during school hours which affected her academically. She used to feel very frustrated because her peers and teachers did not understand why she was skipping so many days of school. I thought I was doing the right thing by just sending a doctor’s note to school to excuse her absence not knowing it was not helping any of my kids with catching up on their schoolwork.
These were very difficult times for my daughter as she was just a teenager and her classmates used to frequently ask her questions regarding her need to go to the bathroom frequently or why she missed so much school. This caused depression and anxiety in my daughter. Her menstrual cycle typically lasted up to three weeks and her stress level increased to the point that she no longer wanted to go to school. She was afraid of being questioned by her teachers and classmates. She just wanted to be another teenager without so many health problems. We were very frustrated to see her in that situation, so we decided to have a meeting with all her teachers and the school counselor to ask for their help and inform them of what she was going through. During the meeting many of the teachers apologized as they had no idea what vWD or Factor V Leiden was. My husband and I took the opportunity to share what we knew about it, and we also invited an advocate to come with us to explain in detail to the teachers about our children’s’ conditions. It was then that the school counselor offered us a 504 plan.
We had no idea what a 504 plan was. The school explained to us that the 504 plan offers students with disabilities, or any other medical condition, the opportunity to develop a plan that covers anything that limits the student’s activities. The 504 plan allows the student to receive accommodations or modifications without affecting the student’s school performance. The counselor explained to us that the plan could provide Michelle, my daughter, and Jesse, my son, with all the accommodations necessary for them to succeed in school and not be affected academically during those periods when they missed school due to their health conditions.
I remember that all the teachers were willing and offered information on what they thought would help my daughter and son. For example, some of the accommodations my children received were a copy of modified textbooks for home and school, a pass to use the restroom when needed and a pass to the nurse’s office where they could both put on or take their medication in case they had a bleed. They were also granted permission to be late or miss school if they had a doctor’s appointment or were feeling sick, preferred seating, limitations for physical education, extra time to complete homework and assignments if they had to be out of school, access to class notes and all their teachers were trained on what to do in case of a bleeding episode.
My husband and I were very pleased to have a plan in place that would provide our children with accommodations at school. The following year we decided to invite one of our HTC nurses so that she could explain to the new group of teachers about my children’s medical condition and provide updates for the 504 plan. I am extremely grateful to the advocate who was by our side the first time we opened the 504 plan, the HTC nurse, the teachers and the school counselor for all the help they provided to us. Both of my children’s lives changed for the better, they had a plan in place that was protecting them and they felt empowered. My daughter’s stress level went down, and she was able to get through the rest of her high school years and college like any other girl her age. My son was able to do the same. Thank you so much for letting me share my story and if you still do not have a 504 plan I encourage you to talk to your HTC nurse and school counselor about the possibility of creating one for your child.
Lupe lives in Las Vegas with her husband Hector and their children Michelle, Jesse and Alex.
Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.