My Initial Cancer Diagnosis: My Version of an IEP

Let’s talk about medical diagnostic procedures and initial IEP (Individualized Education Plan) meetings.  When you are told by a doctor that they suspect you may have cancer and a biopsy is needed, the next couple of days are difficult and anxiety filled. 

“Do I have cancer?”

“ What will happen if I have cancer?”

“ How will my life change?”

“ Will I die or survive?”

Your sleep is disrupted while you wait for the biopsy results. Once you receive them and a treatment plan is in place, you experience temporary relief because at least you know what will happen for the next couple of days. Your health is now in the hands of a medical team and you, as the patient, should be at the center of that team. 

Both my children have received special education services. Before we could determine if they were eligible for special education services, they had to undergo a very lengthy academic assessment, similar to the medical biopsy. There were ratings scales for both the parent and the teacher to fill out, student interviews, academic assessments, observations and all of these were completed by multiple people. It took a couple of days to complete this academic “biopsy” and at the conclusion, a team was convened to discuss the results and the academic “diagnosis,” or eligibility for special education. As an educator I knew how this process worked, so I brought funds of knowledge to the IEP table that allowed me to ensure my children were truly at the center of our discussion, but what about the parent who is not an educator? Or the parent who is not fluent in English? Do they leave the meeting feeling like they have a plan for their children to truly succeed? 

The IEP meeting can be a daunting experience for a parent. Having experienced both an initial cancer diagnosis meeting and an initial IEP meeting, both can feel overwhelming and there is a lot of grieving involved. Now, you must be thinking, “Yes, but one of them really is about life or death and the other one is about school.” True, but as a parent that is new to the IEP process, walking into a meeting with many educators around the table can feel very daunting and make you wonder:

“Does it really take all of these educators to figure out what might be going on with my child?” “Will my child ever have a chance of succeeding at school?” 

“If I’m not an English speaker, how will I communicate effectively with the school team?” 

So, let’s talk about how IEP meetings run at your school.  Here are a couple of points and questions to ponder:

1. In the dissertation, How Do Parents Experience the IEP Process?, Andrew Panico found that parents felt that receiving information about the IEP process prior to their initial meeting was key to their overall IEP experience. Parents found the IEP process is replete with technical terms, timelines, medical jargon, professional roles, and educational law. Panico found that none of this knowledge was intuitive for the parent participants, even for those with backgrounds in education or law. 

   • How does your school team inform families about the IEP process? How do you ensure that you build a foundation of trust between families and the school team from the beginning?

     
     

2. Understood’s podcast episode,  Why We Cry at IEP Meetings, explains that whenever parents and teachers meet to discuss the needs of a child who is struggling at school, emotions tend to run high. Often, there is a sense of frustration that comes from the school team perceiving the parents to be demanding or not involved enough, to the parents feeling the schools are not caring enough or working together to meet their child’s needs. Personally, as a parent, I felt frustrated if I felt the school team was not taking my child’s voice into consideration. 

   • Does your school team start IEP meetings with an opportunity to share the students’ strengths? Do you ask parents to share their child’s strengths they observe at home? Does the student get an opportunity to share their own strengths and contribute to the solutions?  

   • Does your school team ensure that all families that need an interpreter have one present at the meeting and seated next to the parent(s)? 

   • To build a true sense of “team,” do you ensure that at IEP meetings, the school team is not sitting together on one side of the table? Is there a possibility of using a round table for your IEP meetings? I recall one of the Education Specialists I worked with would start each meeting stating that we were all sitting around a “kitchen table” to come up with a plan of how we were going to best support the student and ensure their success. Parents would share that this statement always made them feel more at ease and part of the team. Does your team begin with a similar statement to ensure the team is clear on its purpose and to make families feel included?  

There are many connections between the education and medical sectors, including how disparities in communities of color affect the quality of services they receive from both these sectors. In the medical field, the centering of the patient is a marker of high quality medical care. In the education field, according to Dr. Karen Mapp at the Harvard Graduate School of Education, the centering of the student is a marker of a school team understanding that respectful partnerships between families and school staff are essential to not only student improvement, but also school improvement. 

I hope this blog entry has given you an opportunity to reflect on how IEP meetings run at your school site/district and how they can improve to provide an equitable, respectful, and successful experience to all the IEP team members, especially the students. 

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