Over the past 19 years, I have had the privilege of working in the field of special education and school leadership in multiple states, most recently in Texas. While other states use the term “IEP meetings” (Individualized Education Program), Texas uses the term “ARD meetings” (Admission, Review, Dismissal). This is why I am referring to those meetings as “IEP/ARD” in this post. For the first 16 years in my career as a special education teacher, I thought about my work differently than I do now that my own daughter has an IEP. I have discovered what it is like to be on both the professional and parent side of the issue when discussing special education services and supports. I hope my story will help both educators and parents to think about what life is like on the other side of the table in an IEP/ARD meeting.
Before 9:00 pm on July 27, 2017, I never thought about if the students I worked with during my years as a special educator had a life experience outside their disability. Nor did I ponder over their parents’ lives or what they thought about their child’s circumstances. However, I always believed I was good at my job and helped students. I wondered why parents expected their child to be the one and only thing on my mind. And never seem to care about the fact that I had, not just every other student to worry about, but a life and family of my own. And really could have benefitted from their help, rather than just their demands.
I knew in an instant at 9:00 pm on July 27, 2017, that it was either my daughter’s death or whatever I could turn her survival into. This was not supposed to happen. The surgery seemed to go fine. She was awake and talking, but then her blood pressure started spiking. I was not prepared to feel so helpless as she slipped through my fingers. I watched the color of life leave her face as she mouthed a silent scream, her terrified eyes looking at me, then through me, and then heard the piercing sound of a machine telling me my child’s heart had suddenly stopped.
She was 13 years old. It was the summer between her 7th and 8th-grade year.
I know the difference between accommodations and modifications. I know what special transportation is. I have written, updated, explained, and transferred IEP paperwork. I know how often parents should receive progress on their child’s goals and objectives. I know how to do special education testing and have attended IEP/ARD meetings as a special education teacher, ARD facilitator, and campus administrator. I know the referral process and the re-evaluation process. I know all the acronyms. I can describe the continuum of services and have taught in most of them.
I learned what it feels like to be told your child is in critical condition. I watched countless needles pierce her skin and listened intently for machine alarms and discussed fluid outputs and countless vitals. I learned all the acronyms and watched them do all the tests on my daughter, day after day, while she lay there with hoses and tubes sticking out of her arms, face, neck, chest…all of them continually vibrating due to the cold mat they had her on that caused her body to shiver instinctively.
I have negotiated my child’s accommodations and supports. I have met with Gifted/Talented coordinators, ARD facilitators, case managers, administrators, school nurses, SpEd counselors, OT, PT, VI and school speech staff, in addition to the surgeons, pediatricians, ENT doctor, cardiologist, neurologists, psychologists, and private OT/PT/VI and speech therapists. I have reassured my daughter that special education is not a label or a life sentence and she should not be embarrassed by it, even though she is. I have advocated for her desire and right to remain in advanced classes despite her disability and I am trying to get her to advocate for herself, while also telling myself at times to let her just be a teenager. I have tried to reassure tearful teachers that they should not take any of my child’s frustrations personally and that we’re still learning how to manage her brain injury.
The point of this story: empathy
Educators need help and support to put the “child” front and center in their work, rather than to focus on the “student.” A student is a role; a child is a person. Children need to believe that the adults in school genuinely care about them. Children also have worried parents who have to manage essential commitments beyond academics that are competing for their child’s time, including the time to just be a kid.
On the other hand, parents need to understand that being an “educator” is a career choice, not a magical power. Educators work extremely hard to manage multiple demands for their attention, get little to no breaks during the workday, cover other people’s classes when subs aren’t available and put on a pleasant but authoritative face so they can teach the required curriculum with as little disruption as possible to a room full of children who would rather do anything than complete that classroom assignment. The people who are educators during the day should be able to put their work responsibilities away at night and on the weekends; they have their own lives and families too. We could all use a lot more empathy for one another and really think about what life is like on the other side of the table at an IEP/ARD meeting.
By Jennifer Patterson