Leukemia, Section 504, and Education Planning

I met with Jack’s first grade teacher, the school principal, and the district nurse yesterday to discuss a 504 assessment for Jack. If you aren’t familiar, Section 504 is part of the Rehabilitation Act that protects students with disabilities. Since Leukemia is a chronic, life-threatening illness that impacts his learning, working, and performance of manual tasks, he qualifies as disabled. Once a 504 assessment is made and it’s determined that a student qualifies, an IEP (Individualized Education Plan) is typically created to address the student’s needs in school.

Obviously, it’s taken me a while to get in gear and ask for this. The irony of requesting this assessment now is that Jack has caught up to his peers in most areas of concern since he started back to school in October. With that said, he is failing Physical Education, missing quite a bit of school, and his self-esteem and confidence are low. His stress level is difficult to manage even on a good day.

I was nervous going into the meeting. Not only am I still getting used to being an advocate for another person – a person whose needs have changed dramatically in the last year – but I’ve also read complaints about parents’ frustrating experiences with schools when enacting 504. I worried that I might get pushback from the school because Jack really is performing well. Thankfully, the school officials were all very understanding. I feel like we are off to a good start in helping to get Jack some relief.

In our hour-long meeting, I summarized Jack’s medication and treatment routines, explained how his health and side effects of treatment can impact him on any given day, and shared my concerns related to the challenges these things present to his education. Mainly it boils down to the fact that Jack puts forth so much additional effort in order to meet standards because of these challenges that it has compromised his emotional health and feelings about school.

We recorded the following challenges that impact Jack’s ability to learn:

  • Sensitivity to temperature changes
  • Bone and joint pain, soreness
  • Catheter in chest
  • Lowered muscle definition
  • Difficulty with coordination
  • Delayed reflexes
  • Shortness of breath
  • Dizziness
  • Weakness/fatigue
  • Attention/focus impacted by chemo treatment levels
  • Monthly steroid impacts mood and ability to cope with expectations
  • Medication taken at school, can get headache near time of receipt

Based on these things, the school will make accommodations for him to aid his learning in the following ways:

  • Additional time to complete assessments and assignments
  • Extra opportunities to repeat and explain information and directions
  • Extra time to respond to information and questions
  • Teacher will provide parents with work when child can’t attend school (to be completed if he feels well enough)
  • PE accommodations, such as alternate responsibilities/tasks
  • Teacher will remind Jack to eat and take snacks to accommodate his lack of appetite and slowness/distractibility when eating

This plan is a bit vague, but it should be enough to give the teachers the ability to customize the help they give Jack without making it a big production in front of his peers. I’m hoping that the additional understanding of Jack’s health issues from his teacher’s will take some of the pressure off of him and maybe that will even result in less self-injury! That’s my hope anyway.

I felt so relieved when I walked out of that office! I alternately wanted to cry and giggle hysterically. I didn’t have to push for any of this and it felt like I was part of a team that has Jack’s best interests at heart. There are people who have access to things that I don’t and they are going to help my child – we aren’t alone and we don’t have to spend tons of time blindly fumbling around the educational system.

Instead we can spend our time blindly fumbling our way through the parenting of our chronically ill kid! It may be a small victory but I will take it!

2 thoughts on “Leukemia, Section 504, and Education Planning”

Leave a Reply

Your email address will not be published. Required fields are marked *